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?

Obviously it depends on whether OP could manage alone financially.
But if her DH isn't pulling his weight at home, and is being consistently emotionally abusive to their DS while refusing to change his behaviour, it might well be the 'least bad' decision, sadly.

I have a 6 year old who apparently has no identifiable needs and yet there isn’t a day that goes by that I don’t have to change him due to an accident. Just yesterday evening we took him to the shower to wash him off, I’ve been doing this for 4 years now as we don’t use nappies, it’s not like using nappies massively helped the situation just contained it, he didn’t want them, but then still a method of clear up is required. I have no advice because his needs are still very different from your child’s but just know that some children struggle with this area and no amount of fighting or “training” helps, and believe me we’ve tried everything. School however are very supportive and really don’t make a big deal of it, he is not delayed in any other area, and even school don’t view this as a trait of having some big problem, everyone just gets on with it so you really shouldn’t feel concern about this aspect in the lead up to school.

I was kind of on the fence after your first post as whilst it wasn't fair you were being expected to pick up the pieces of your DH's inability to cope, and his behaviour was not good parenting, it can be HARD especially with SEN and no real guidance how to do things- we aren't all cut out to be able to remain calm and loving at all times and it can be very triggering and infuriating if you aren't that sort of person and up against these kind of difficulties.

However having read your update it seems like this was not just a rare case of DH getting especially stressed and crossing a line.Your DH is not taking responsibility for/owning or changing his behaviours, does not sound remorseful for them, and is consistently very blaming and shaming towards your son and generally viewing him with a real negative regard.

This will be incredibly damaging for your DS if he grows up with it continuously, so in your situation hard as it is i think i would honestly be putting an ultimatum in with the DH- change or leave.

Please stop saying that DH has normal reaction, etc. Why it's always the mother who needs to stay strong and stay WITH CHILD? As a mother with SEN child- I had the same situation and tried to solve everything and "help" for husband. I ended up suicide and thanks God my neighbour came back earlier from work that day.

Your husband is a GROWN UP MEN, not your second child.
Speak with him and be very straight.
It will get little bit easier when child will start school as you'll have some breathing space and more people involved. I had days when just 15 mins talk with teacher would push me through the day. Because they know what you are dealing with and they'll support you.
Big hug from me ❤️ Your feelings and your mental health must be priority.

He doesn't need to be 'very securely' potty trained by the summer at all.

I really couldn’t be with a man that was so unhelpful and cruel, the resentment would be too much.

Have you tried any of the toileting programs for children with Down syndrome? I think they are held by the Down syndrome diagnosis network. It sounds like your child is doing well.
I’ve a much older child with Down syndrome that is still in nappies unfortunately. This has not been for a lack of trying. They have a lot of health issues, severe delay and I suspect autism too though making this a difficult task, but we will get there in time!
my husband struggled with our child for a few years. He struggled with the amount of time we spent in hospital (the first few years were extremely hard) and how much time we spent away from home/other children. Well they now have the best relationship! They have the exact same personality and are absolute besties that hate being apart.
do you have any help? Some time just the 2 of you might be helpful. I don’t have a lot of help but do find every now and again my husband and I need time to ourselves to have a date night and it’s amazing how this helps us recharge. Special needs parenting can be extremely hard, it sounds like you’re doing a great job and a bit of respite might be all you and your husband need to boost the mood.

Firstly, practical advice from a SEND parent: why are you still trying to use a baby changing table for a 4yo? Stop lying him down and learn to change him standing up - it’ll take away some of his anxiety about it. Give him the wipes and clean nappy to hold so he can “help” and feel like he’s having some agency over his toileting. Secondly, 4 with SEND is very young for toilet training and if he’s not ready then he’s not ready. Your DH pushing him is not going to help in the slightest, in fact it’s only going to make accidents more likely. I’m presuming you are under community paeds, and they should be able to refer you to the incontinence team for advice.

SEND parenting is really, really hard. I think everyone loses their temper sometimes and it’s not the parenting experience any of us would choose. Your DH sounds very depressed, to be honest, and should see his GP. In the short term, he needs to walk away. If he’s starts to lose his temper, he needs to walk away.

stop lying him down for changes, hes four not a baby. As a sen parent its easier for them to stand while changing. Secondly four is very young for a send child to toilet train.
Thirdly, your husband needs help or he needs to go. He is being extremely cruel, yes he’s angry he didnt get a healthy child with no SEN needs but you do not take your resentment out on the child.

Agreed.

When you decide to have children, you do it knowing that life is full of suffering and your child will suffer. Why did he make that decision if he can't cope with his child's suffering?

As a mum to a child with learning disabilities and high care needs I really do feel your pain here. My DH has been much slower to accept our DC’s diagnoses, and has behaved similarly to your DH in certain times over the past. I think you’re right to draw the line firmly in the sand over his behaviour, even if his behaviour comes from a place of pain it is unacceptable for your family - he is creating additional emotional strain on you (which you really don’t need!)

i think parenting is a humbling lesson in life, it’s never how you imagine it to be, and when your child has SEN it is often even further from how you imagined it to be. Your husband has to learn to accept that the version of fatherhood he created in his head doesn’t exist, and never will. He doesn’t get to do all the nice things he thought he’d do. No parent ever does. But he does have a beautiful child that loves him and can bring untold joy into his life, if he lets him in.

Your DH comment, “I didn’t sign up for this” made me question if you were both told your son would have Down Syndrome when pregnant?

your husband is applying what he expects of a non-disabled child to a child with Down syndrome, and he’s angry. It sounds like he had no idea of the realities of caring for a person with DS, either because he didn’t research it or because, if he did, a lot of the info available is biased (eg about how much joy people with DS bring to people’s lives).

i think that whilst manageable now your husband also needs to consider how much more difficult it might get. He needs to contact a DS charity (not a religious funded one as they are biased) and ask for some help understanding the realities.

what was his own childhood like? My husband also reacts with similar anger. His mother likely has severe undiagnosed ADHD. She was angry and emotionally abusive. My husband often repeats those behaviours in times of stress (childhood trauma bonds).

With respect, you’re minimising. As was @Moffett. When you have a disabled child very day can be like this, or present a different challenge. It can be full on, relentless and exhausting, and those with no direct experience of disability really need to stop comparing it to life with a non disabled child because it’s just not the same thing.

Downs Syndrome presents with many different issues, so there will be many challenges ahead and advising the OP to go straight for considering ‘options’ that will inevitably lead to her parenting alone is irresponsible in my view. I’m not condoning DH’s behaviour towards his child, but his expectation that his son will learn from it, a perhaps a non disabled child would, is evidence that he’s not equipped to deal with what’s ahead.

l’m with other posters here in that l think both OP and her DH should try to access professional help and support in understanding DS’s needs and therapy to help cope with personal issues and feelings of grief etc, connected with the situation.

OP has already stated that H has refused any support or counselling. I think a lot of commenters have missed that post

This. All day long.

I’m sorry, it must be very hard raising a disabled child. Perhaps counselling would help you both? 🌺

You have no idea what you’re talking about. Potty training a child with Downs is not the same as with a non disabled child - not in the same league. Four is very young to be attempting this and to try to rush it in time for a specific event like starting school is a recipe for disaster, and trauma for the child.

What’s needed here is a different approach to nappy changing. Standing rather than using a changing table, and involving the child more, instead of passively changing him as you would a baby. At four he’s more aware of what’s happening and needs to be given some role in the process, even if it’s just holding the clean nappy to start with.

How on earth can you write this when you haven't met the child?

Do you even have any experience with a child with Downs who has had this problem?

Thank you, l missed it too. But that doesn’t change my view of what’s happening. DH really does need to seek help if they are to make this work. And OP needs to try to support him in doing that because as hard as this is now, it will be monumentally difficult as a single parent.

It sounds as though DH is grieving for the life he thought he would have with his child. He hasn’t fully accepted it, and there’s resentment that’s now spilling over into his interactions with his child. Without professional help for them both to come to terms with this and prepare for the difficulties ahead, their marriage won’t survive and OP will inevitably end up shouldering the full responsibility.

Very easy to say but there’s may a truth in walk a mile in someone’s shoe before you criticise them

this isn’t saying he’s not wrong but having friends with kids with additional needs I’ve seen what it’s done to them it’s absolutely broken them

As a matter of interest (and not meant as a barb - obviously I don't know you) do you yourself have direct experience of being a parent to a child with a significant disability - developmental or otherwise?

Parenting a SEND child can bring out the best in you. It can also bring out the worst, from time to time, I'm afraid. DH and I are parents to a profoundly autistic teenager with LDs. People on the outside think we do very well. Some of them think we're saint-adjacent. I've heard enough platitudes over the years about how 'only special people have special children' and 'you never have a child you can't handle' and sometimes I read below these lines of crap and think - 'this is your way of consoling yourself for the horrendous fix we find ourselves in - it's ok, we're 'special' and we can cope'.

Truth is, nobody is special. Some of us have been presented with a life's work, and emotionally draining, massively hard and unpaid work at that. We do it because we're parents and love our children. Even when they're hitting us as hard as they can (because they don't understand why this isn't on) or smearing their crap in bed, or lying on the floor of the supermarket having a sensory meltdown. But for the most part, adults who don't have this in their lives find it very easy to look the other way, call us heroes but also be quick to judge.

You (and like I say, this might not be you personally) just can't get it unless you're there. None of us are born saints, and certainly in the earlier years, adjusting your expectations and your patience level takes massive effort and a sacrifice off the level expected by other parents. And that goes on, for as long as you're alive.

OP, your DH needs counselling - you both do, it's a tough gig. Even if things get worse and you separate, he's going to need support to be able to parent well and cope with it. Right now, he seems to feel that being a compassionate parent is optional and you're doing that bit so he doesn't have to. You need to talk properly about it and divide up the times that are most challenging. And it WILL get easier for both of you once your son is in school. (and school won't, or shouldn't, mind about the nappies so please don't sweat that part of it. It'll happen in time. My son with ASD came out of day nappies at 7.)

Most peoole don't expect to have a disabled child, its not usually on anyone's agenda
My child doesn't hsve down syndrome but he has a rare chromosome disorder, and severe autism and learning disabilities
The early years were very hard for me to accept that life wasent going to be how I imagined .

Yes i agree with this my son was in nappies until he was 9 it was much easier to change him standing up .