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?

Its offensive to autistic people.

Most autistic people are less badly behaved that non autistic people.

I believe this was a sarcastic comment

This op .
It is what it is and their will be so many happy times a victories whilst you raise your gorgeous boy but he needs to accept that their will be more challenges too and he cannot expect the same progress as a child who doesn't have ds needs .
He needs to accept that ds is going to be in his own journey and normal milestones and timeframes don't apply ,,he needs to take the pressure if himself and you and your child and accept him for who he is and celebrate the milestones as they come rather than forcing them which is only causing unnecessary stress and tension .

My son has 2:1 in mainstream which also includes toilet needs and he's 10 so obviously much older than 4.

I agree that people shouldn't offer advice when they clearly have no idea.

Maybe an honest conversation, discuss things that would help, therapy. He’s allowed to feel things as are you, he perhaps needs to realise the impact his behaviour is having. Sounds like everyone needs a break x

I’m so sorry for the way your husband has behaved. In short, it isn’t good enough. Parenting a disabled child is a life-long commitment that goes well beyond what most parents will ever experience and it requires an insane level of resilience and a love for that child that goes beyond all things because you will be fighting for him for the rest of your life. Do you think your husband, and your relationship, can endure that? Can your son endure growing up with a father who is embarrassed of him and who resorts to shouting at the first challenge?

I hate to say it, but you still have so much to come. Starting school, transitioning to secondary, puberty, leaving school - all of which will place strain on your child and you both. If you are starting here, your husband needs to find his resilience and compassion fast, or you need to do whatever is needed to
protect your child. Screaming and shouting at him over a nappy will cause an incredibly negative association and is likely to make toileting much more traumatic. If it helps you contextualise, my son has severe learning disabilities and at 11 he is still not toilet trained. He may never be - he may get there in a year or two or three. We work on it, every day, with patience (and occasionally a few tears after bedtime). My husband would stand on top of the world and shout his love for him - nappies, disabilities and all. That’s the kind of love it takes to raise a child with complex needs - and believe me it is tough enough then to keep a marriage, finances and family life on track. Does your son have a place at a special school or is he joining mainstream? A special school will not expect a 4 year old with disabilities to be toilet trained and will have their own programmes in place. If your son is still far away from this and likely to be behind his peers in other ways, you need to consider if he needs more support. Being ashamed and forcing his timeline faster than he can manage is not the way forward and will cause more harm than good.

There is so much joy to be had in parenting a child with disabilities - the small wins feel huge and wonderful - the milestones feel like winning the lottery. Capturing that is the secret to enduring the tougher times - and don’t sweat the small stuff. I so hope your husband can find his mettle because he will be missing out on the most wild and wonderful ride with you and your son: you’ve got this mama, but remember that little boy needs you more than anything. Your husband - well, the choice is his.

I really feel your pain here OP. We don't have a disabled child but we have three very spirited children! I recently asked my husband to move out because of outbursts like you described in your post. This has been going on for 8 years now and things are just not getting better. I reached a point where I felt that the immediate needs of the children were more important than the ideal 'stable' family life I was clinging to. It's been 2 months now and honestly I'm a lot happier. That feeling you described of constantly being a buffer between your son and hubby is so familiar, and the constant feeling of annoyance and disappointment that I was feeling whenever my husband shouted at one of us, has just evaporated. I think the weight of that being lifted, has enabled me to care for my kids with relative ease as a single parent. I didn't realise how much it was dragging me down, until it wasn't anymore.

I'm not suggesting that you leave your husband but it's important for you to be aware that he may not be willing to do the work required to improve things. I expressed my feelings many times over the years and my husband tried a few things but ultimately it wasn't enough. Stay strong and be kind to yourself. You are not alone.

I’m really sorry to hear you’re having to carry the load for both of you. It sounds like he’s not coping well. Is he open to counselling or to talking to other dads of children with DS? Are you part of the PADS (positive about Down Syndrome) facebook group? It’s definitely worth joining if not. Also, is there a DS group local to you? Social events with other families with a child with DS tend to be such a good place for a chat and a laugh. I take it your little one is your only child, is that right?

OP,

If he is refusing counselling or any support that will help his behaviour change then I would ask him to leave. What he's doing is abusive and your son needs to be protected.

Of course it's incredibly difficult parenting a disabled child but it isn't an excuse and he clearly doesn't seem willing to change so I unfortunately don't see how your marriage will survive unless he accepts some support.

I think the stats are not good for parents of a child with a disability. It is very stressful for both.

Did you get the DS diagnosis before your DS was born? Did you have chance to prepare before you were both in the thick of it?

Your DH definitely needs help in accepting the child that he has rather than the child he was expecting.

If he can’t do that, I would be worried about the emotional damage that he could do as your DS grows up.

Seriously. It's ridiculous. Used to be depression. 🙄

He sounds like he is doing really well. We trained our non-verbal son by popping him on the toilet after dinner and filling him full of juice - lots of chocolate buttons when he did. I’m sure your son will get there. Once he’d cracked days the nights were sorted quickly. He was fully dry by about 5.

How would your dh respond to some really straight talking? If he didn’t sign up for it and can’t cope but also won’t go to counselling to deal with his grief he needs to leave. Currently he is damaging your son and you don’t need to be having to try and limit that when he won’t take responsibility. Is just moping round feeling sorry for himself because a poorly child is struggling with toileting. My son is severely disabled and I honestly could not have coped if I had to look after my husband as well.

Yeah it’s different for him isn’t it. He didn’t sign up for it but you did.

Whats that? You didn’t either? Well i never. You don’t get to have tantrums though do you…?

LTB. I’m willing to bet that your son’s behaviour will improve once his nasty dad is out of the picture.

OP this was horrible to read and I think an awful lot of people on this thread are minimising it. Your husband was extremely abusive towards your son. I don't know what is best to do about it but please keep your son as safe as you can.

Not being toilet trained at 4 really isn't that big of a deal. I don't think anyone should expect a child with additional needs to have mastered that yet. If your husband is behaving so badly over something like that, then I would be worried he will get much worse as your DS gets older and the differences between him and other children become more pronounced. If he's struggling he needs to be the one to reach out and get himself some counselling or get in touch with a down syndrome organisation for support and to speak to others who have gone though the same thing. He's an adult and he needs to pull himself together. Your little boy deserves so much better, and so do you OP. X 💐

The marriage/divorce stats are a bit of myth. I was always told 80% divorce when my son was little - but actually research shows the rates are similar to general population - and if anything families with a child with Down Syndrome have a lower divorce rate.

Are you in contact with any other parents who have a child with Down syndrome?
My friend found that really helpful.

It’s a heartbreaking read op. I think this issue of toilet training needs the heat taking out of it somehow. Your ds will be very sensitive to it and it will be making everything worse. Your DH sounds as though he resents your little boy for having a disability, but he may also be scared about how life will pan out for him, and feel worried about him starting school not trained, getting bullied etc. There may be a lot of fear in his response, as well as frustration. It’s interesting reading from pps who grew up with a sibling with a disability, that often their Dad was the one who struggled with it the most.
I agree with other posters that he really needs some support. He won’t get counselling you say, but maybe he would go to a parents group or something like that ?
Maybe just knowing that your son will get there just a little bit later, might be helpful. Your DH may think that if your ds doesn’t manage this now, that he will remain not trained ? What are your in laws like ? Attitudes to disability in a family can be hard to shake off.

I think you need to speak to DS school and find out what they expect in terms of toileting. Will they accept he wears a nappy? If so you could delay toilet training until the summer. It's far easier to pull up and down shorts than trousers. There might be a time you have to choose between your DS and your marriage because you can't allow DH to emotionally cut off his ds.

Having a disabled child is earth-shatteringly stressful and until anyone has walked a mile in your shoes they simply can’t fully appreciate what it is like on a day to day basis, stretching out for the rest of your life. You are a “forever parent” - there will be no leaving the nest.

your dh sounds like he is burning out and he needs support urgently (I’m not ignoring your needs, just noting what’s happening now for him).

did you know prior to ds arrival that he would have Down’s or was it a surprise ? I’m wondering if there was a mismatch between what your dh was led to believe life would be like, and the reality.

Peer support may be best for him. Skilled counselling will also help but it’s a case of finding the right practitioner : I had counselling paid for by a charity but the counsellor couldn’t comprehend what I was going through. The parent support group was more practical support for me.

This is not a one off, this is the norm. I would have zero tolerance of this behaviour. Either he gets help to work through his issues or he leaves.

I dont really understand the kicking him out idea as a solution to his struggling to cope - unless posters are expecting him to leave and want no further contact with his son.

He will likely have an Education Healthcare Plan in place and schools will go through a consultation process with the local authority to state if they can meet needs. Toileting will be part of his care plan. There are not enough specialist school places so many mainstream schools have children with SEN who are in nappies and have an intimate care plan in place.

This is simply not true. A child with additional needs can go to school in nappies and a care plan will be put in place for this. Staff will change his nappies.

I know a lot of children who started school in nappies.

Mainstream schools can't discriminate against disabled children who aren't potty trained. They will have to accept him even if he isn't potty trained when he starts school and put support in place for toileting needs.