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?

l don’t get your point. Life is not that clear cut and when your expectation of a normal healthy child is shattered and you’re suddenly plunged into an unfamiliar world of disability and everything that goes with it, it’s very difficult to come to terms with. DH is struggling and needs to understand that if he doesn’t overcome his own grief sufficiently to access help to understand his sons’ needs and to be a better parent, their whole family unit is a risk of breakdown.

In a nutshell, and perfectly put.

No he doesn't, I dont know wether he will be going to a special school or not but he will I assume have an EHCP which will outline his needs including personal care ,the school cannot refuse to tske him because hes in nappies and there is very much a reason ,for him not being toilet trained.

Very cautiously posting as I don’t have a child with DS.

I do think you need to say clearly to your Dh that you hear him, but that you can’t continue to see him act like this to your Ds. That it isn’t your job to fix his emotions about having a child he didn’t expect, and if the emotions are getting in the way of him being the parent he is perfectly capable of being, he needs to find a solution. Counselling is one option but I’d agree with experienced posters suggesting peer support.

My best wishes to you all.

What do you mean, 'it's better if this man is not in your lives'?!

He is the father to this child, whom I'm actually sure he does love. It is bloody hard parenting a child with full-on SEN. Even if he and the OP eventually do separate, because this sort of parenting takes a massive toll on relationships and libido, he will still need to understand and cope with the challenges his son throws up. The answer is NOT 'LTB' but 'get specialised help and therapy' - as a first recourse, at least. He needs to step up, and he needs help and compassion with that.

I'm so glad to hear that you think your aunt and uncle never had a cross word to say to your cousin. Did you live with them? Were you there all the time? Did you see them at 3am, exhausted and weeping because their child was night-wakeful? Did you see them being judged by ignorant passers-by because of the way their child was behaving, or sobbing because they were still in nappies and they didn't think they could change one more nappy without screaming?

Not all people with DS are the same, of course. Not all children with SEND are the same.

I was writing a similar reply to the above poster but you put it better than me
Its very easy to judge when your not in that situation ,or the only experience you have e is a cousin you see occasionally
Nobody when under such extreme parenting is perfect at all time ,s

I feel very sorry for him. We have a son with SEN which has posed some challenges e.g eloping which has improved but he has darted into roads to reach something he’s interested in and would gladly run into a pond to chase a duck for example. He also escaped from the house and ran down the street when I was upstairs once which was terrifying. I have anxiety all of the time, have to ensure doors are kept locked and keys hidden.

Anyway, I can further sympathise with your DH because we don’t have to deal with meltdowns but I have witnessed other parents with SEN children in the school handling this as standard. It must be exhausting, relentless and miserable. That coupled with him needing nappies still as well, your DH honestly just sounds like he’s reached the end of his tether.

I can also empathise with the embarrassment. It stems from wanting your child to not stand out and be different from others I guess, you don’t want people to stare at them. At least that’s how I feel and I imagine your DH has similar concerns. Plus he’s right, he knew about the disability but there’s no way to know how severe it will be or how you’ll cope with it until they’re born and develop.

I suggest he reaches out for support. Counselling, support groups etc. Things will
be out there. You also do this with him, it will be good for you both.

Agree. As hard as this is now, it will become monumentally difficult as a single parent and as a mum, OP will inevitably end up with the lions share of responsibility. I think many people are posting from the point of view of ‘bad’ days with non disabled children, and are failing to understand that that bears no resemblance to life with a significantly disabled child, where every day can effectively be your worst because you’re facing a new facet of that disability.

DH clearly needs help because there are many challenges ahead, and he needs encouragement to seek that help, not least because the alternative is the breakdown of the family unit. Trying to convince OP she’d be better off on her own is irresponsible in the extreme. Nobody is perfect and DH is clearly struggling with multiple issues. Maybe mutual support - talking things through and seeking help together is a more compassionate and realistic option to branding him as a useless dad and advising OP to throw in the towel.

Agreed.

I'd be embarrassed changing a four year old, or sending a four year old to school in nappies, special needs or not. It doesn't make it right but it's absolutely a normal response to seeing your child delayed imo.

It's best for everyone if he leaves, imo. He didn't sign up for it and he's not capable of being the dad the child needs.

Lots of well-meaning but SEND inexperienced parents here.

There's a MN obsession with toilet training before school. That doesn't apply here. He will get there when he gets there. My profoundly autistic brother was potty trained at 7, and some of his peers were later still or not at all.

Two things are true:

• This child's dad needs to abruptly stop behaving this way, it is abuse and can't happen again. He needs to hear this.

• This father is clearly struggling and needs help

I'd suggest getting husband to the GP, consider if antidepressants might help short term and urgent counselling for longer term help (charity counselling may be faster if NHS available). There should be an assumption that he will return to doing his fair share of parenting his child.

In the meantime he needs to learn to walk away when overwhelmed and not be abusive. I think he should help with nappy changes but not lead for now, with a view to working on this. Some time where he can focus on positive time with his child for bonding might help.

Husband may or may not be ND, so many parents are, he needs to find a way regardless. My mum is autistic (to the extent that she was diagnosed in the 1960s) and still managed to parent her very disabled son, my parents found a way of fairly dividing the load while playing to each of their strengths.

OP, is there anyone in your life that can give you a break? If there's a helpful grandparent or aunt/uncle I'd be encouraging this relationship and trying to get some time for myself until your husband is able to do his share again.

(Edited to remove suggestion of private counselling which was probably unhelpful)

Oh look! It’s only 9am and we already have the internet’s most ignorant comment of the day! 🎉🎉

It's best for everyone if he leaves, imo. He didn't sign up for it and he's not capable of being the dad the child needs.

How is it best for everyone ? The OP is left to cope alone, the child grows up without a father, and a clearly grieving and struggling father is denied the support he needs to become the parent he needs to be. Particularly ridiculous suggestion when that help is out there. All he needs is support and encouragement to access it. Throw in the towel seems to be the default here.

Too late to edit but wanted to add that the poster being replied to wasn’t suggesting that they were embarrassed that their child was still in nappies at an older age, but that they didn’t want their child to be singled out because of it. The child themselves is not the source of embarrassment, but the reactions of others, who like @NaiceBalonz, have no understanding of disability, or desire to learn.

I think we can all empathise with how it might feel embarrassing, but this feeling should be worked on and through by the child's father. It's part of accepting the child he has.

There are NT children at 4 who aren't toilet trained or who have accidents. I personally wouldn't think anything of a friend's child needing more time for whatever reason.

Your poor baby. Your husband is being abusive towards a young child with disabilities. I couldn't sit back and watch that happen. Has he shown any remorse?

Absolutely this - OP's husband needs to find the things he feels he CAN do right now, and then do them really well. Having more positive experiences with his son will build a better relationship. That's obviously a temporary stage - he can't opt out of the less fun stuff.

As a side note: some people are just very, very hung up about dirty nappies past a certain age, and even about shit itself. My PIL are like that ... they were horrified (and let it be known) when my NT just-3 yo was still in nappies and berated us about it a lot. Turned out, MIL found it reminded her of a more impoverished time when older toddlers in nappies were a marker of poverty and neglect. (DS was neither!) DS2, our very autistic and learning disabled son, was in them until 7 (and at night until about 10??) and thankfully she learned to keep her disquiet inside. She wasn't having to change him, after all! But she did have what I felt was quite a disproportionate Thing about nappies and continence. It took many years, ERIC leaflets, etc, to educate her and she was never really 'ok' about it.

So I think perhaps OP's husband may have a bit of an issue about that. He can't help having that issue but he can control his response to it, and he can educate himself about different milestone ages when a child has a SEND.

And once again, school will not mind! This child will have an EHCP and schools are very geared up for changing nappies. (and I keep hearing that since Covid, lots of NT kids enter school not fully continent, for fairly complex reasons, so he won't be the only one.)

You both need regular respite. Your H is just burned out. Kids will do that to you! Any family to babysit you can have a weekend the two of you? Or professional services that offer respite care? Be sure to book in regular breaks and things to look forward to and H will calm down and DS will get easier as he gets older even with his additional needs.

I would be embarrassed posting something so ignorant, have you ever tried to toilet train a disabled child im guessing not
As for its better he leaves words fail me
Nobody signs up for being the parent to a disabled child.

You're spot on about the likelihood of separation. It sounds as though @BaronRock's husband is withdrawing and internalising how he feels. He probably feels ashamed for wishing his child didn't have a disability (he's not going to talk though if he thinks all he's going to hear is how wrong he is to feel that way).

Society has been coached into believing that people with learning disabilities are capable of far more than they often are, which leaves parents/carers almost entirely unsupported. It also leaves adults with learning disabilities in awful 'care' in the community circumstances. No one wins.

My SIL has down syndrome, she is in her 50's now and still has soiling accidents. She's still a slow (it can take her an hour to eat a simple meal) and messy eater. She still digs her heels in when her routine is deviated from. She's also recently been diagnosed with early-onset alzheimer's. My MIL raised her as a single parent, her marriage ended because of the challenges (and that was in the bad old days of the 70's and 80's whereupon there was actually more support. Parents weren't routinely fobbed off with unrealistic expectations and the assurance that big smiles and endless cuddles will make any challenge barely noticeable). I feel heart sorry for my MIL with this fresh set of challenges, because she gets very little practical support and zero emotional support.

It's a huge undertaking, and yes @BaronRock and her husband would benefit from communicating (perhaps through therapy). The issue is that the support often isn't easily accessed, if its there at all.

I think you need some marriage counselling. Having a child with additional needs is very hard, and doesn’t need to be faced alone. It’s all well and good trying to keep the high moral standard but many people need extra help emotionally and mentally to cope and it’s not unreasonable at all - I would be inclined to listen to your husband on how he cannot cope, and seek help for him and yourself to make you a stronger team. This is in everyone’s best interests, including your sons’.

the second thing I wondered was whether his toilet needs are related to downs- it wasn’t clear to me from your post.. Is there a reason you can’t potty train? Perhaps your son doesn’t like feeling wet etc and so has big negative feelings around that; and he may well find using potty / toilet preferable once he’s grasped it. I think you need to address this as it’s a huge consequence for the rest of his life if he cannot use the toilet etc obviously. I would say of all the things to aim for, this is one of the most important, if not the most important.

obviously your husbands verbal outburst is unacceptable. I would see it as a call for help in that he cannot cope any longer. Don’t just blindly carry on and heap blame on each other: it won’t end well for anyone including your son. You will all benefit from a stronger, calmer, unified family unit. Sit down and make an action plan and then approach your husband with it. Everyone needs to feel listened to, including your husband, and your son.
very best of luck to you xox

Yep. I’m finding it unbelievable that they think @sartre was saying they were embarrassed by their childs’ needs, when in actual fact they were saying the exact opposite - that they were embarrassed for their child being singled out by the behaviour of others.

Easier said then done im afraid
I have regular respite for my now nearly 16 year old disabled son ,but its taken years to get this level of support and its very area dependent.

I think you both need additional help, and for different reasons. Him as he can’t accept the situation, which is whay this is. He can’t accept it and you having to deal with him and the fall out from it.

he can’t keep saying no to help, that’s just another symptom of his not accepting it. And when his non acceptance turns into cruelty to his son, then the time for accepting his no helps has long gone.

i think when you’re son is in bed you need to speak to him. Not in an accusatory way, but that you both need help now to understand what you face, how it will play out, how to cope, and you need to do it for your sons sake and for both of yours.

if I’m honest, I’m not sure he will accept help, and I suspect it will get worse. His non acceptance is potentially here to stay, and you will need to decide your own course of action in that situation.

Wow. I can’t make up my mind which is worse - that you think respite can just be conjured up whenever you need it, or that you think regular breaks away from the reality of life with a disabled child are the answer. There’s no guarantee that life will get easier, there are many challenges to be faced in the meantime, and DH needs help and support to turn and face his responsibilities, not be offered treats in return for doing what he should be doing as a parent.

He's not being denied anything, ffs! He's refused, presumably repeatedly given how OP worded it. He WON'T get help that he very obviously needs.

I'll say again, as I did in a prev post, the assumption is that he's like this cos of the DS when in reality he might have been just as appaling with an NT child with no disabilities at all - plenty of men are.

Op is already doing this on her own for all intents & purpose as the father refuses to even take his own child out on his own. She's also bearing the additional weight of his behaviour towards a child, a vulnerable child & having to act as a buffer to PROTECT that child.

We'd not be excusing that behaviour from a father towards an 'ordinary' child so why an extraordinary one? And why is it always the man that is the issues when it's hard work for everyone involved?