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?

It happened to my son.

Perfectly healthy until he was 8 and then he wasn't. Just like that.

I didn't think I'd cope either but well, you simply have no choice because what's the alternative? I think that is all pp's are trying to say.

Admittedly respite is not easy to come by I know that but it is out there. I think we all need a break sometimes. Yes hubby needs to do his part but caring for a relative with disability can be very challenging and in my opinion it is important to plan in breaks.

Changing Places Toilets are fully accessible toilets with full size changing tables hoists etc for this purpose, there is an interqctive map to plot route or tell you where your nearest one is. Please have a look they can be a game changer.

share.google/wsLHhD6iXQ2WpWji3

Hiya I have a lot of experience with disability personal and professional, however with adults I don’t know the children’s system, but for adults it is available. Almost always through charities, usually these are specific to the diagnosis as a search starting place. I am familiar with cancer services that support young people eg teenage cancer trust that offer these services or links to these services in the past for young people but I know cancer is well funded while other conditions are not. Again for adults and young people tgere can be budgets for care in the community but probably unlikely for little ones. Yes social services and early help are avenues as you said. Sorry to not be more help with children’s devices I hope the many families out there that are managing these needs are able to access some support.

Only one recommendation from a friend is that her son is in a specialist school and one of his teachers has a side huddle offering childcare services (couple of juu out as on a Saturday) here and there. Xx

Cancer services support children and their families in various ways but I don't know of any who offer regular respite.

No easy answer to this, do I won’t offer platitudes. But it must be difficult for you all 🌺

Based on what

This sounds like a nightmare OP. My heart goes out to you, and your DS. And your DH.

It's sadly quite a typical time for these kinds of frustrations and struggles to show, when a child with DS starts primary school. Suddenly you see all of these children, and their abilities, and it's really easy to start comparing your child to them and start to grieve for what your child's life will likely be like, and what they'll never achieve or experience.

It sounds like your DH is grieving, and he needs help ASAP because he is causing damage to your son, you, and your marriage. It's sad he feels this way, and he needs to tackle it ASAP. He can't undo the past, and he can't undo that you now have DS.

Did you know you were having a child with DS during pregnancy and choose to continue, or was it a shock after the birth? I think either could be contributing to how your DH is feeling now.

Statistics aren’t the easiest to come by, but according to this 68% of children under a section 20 are disabled.

There are parents that don’t cope, even if others think they have to.

councilfordisabledchildren.org.uk/sites/default/files/uploads/attachments/LAC%20data%20bulletin.pdf

It includes residential special schools so it makes sense that the majority are disabled.

So it's two fold. Disabled children where they lack the ability to communicate are at risk from abuse because they're (sickeningly) an easy target but then there's parents who take the disability out on the kid / can't or won't meet their needs. It's scary that the most vulnerable part of society is the part people are most likely to pre date on

Absolutely, I am completely unsurprised by this. What do people think the care system (such as it is) is for!? Not everyone can cope with a disabled child. The people who say 'you cope because you have to' are deluding themselves that everyone is as strong as they are.

I think most people can't imagine that if it were to happen, someone would put their child up for adoption or neglect their child due to the disability but of course it happens. It's ridiculous to pretend everyone copes OK and raises their disabled child well.

Yes, but why do those residential special schools exist? They exist because there are enough parents who cant' manage complex needs.

Of course it happens. If I were ever in such a situation, I truly hope I would choose adoption rather than neglect, but as others say, one doesn't know how one will react until one is in the situation. All I know is that I wouldn't resign myself to a life dealing with complex needs. You only get one life and mine is too short for that.

They are also generally a very last resort when all else has failed and its not just about what the parent wants ,they cost eye watering amounts of money so the LA and all other professionals hsve to agree its the only place tbat csn meet the child's needs.

You think there would be many adopters wanting to adopt a child with complex disabilities.?

What would happen if someone just said that they were not going to look after their child any more, and they'd had enough? That's something I've often wondered, not just as regards disabled kids, even. Do the state have a duty of care?

I was talking about residential care, not adoption. No, of course I don't think that! Who would?

She absolutely is making sense.

Why the insistence that Everyone would coeo with a disabled child when we know how fucking hard it is to cope with and not everyone is able or willing to cope with everything. Yes, I cope out of a lack of choices I'm willing to mske. But people put disabled kids up for adoption when they'd have kept a non disabled child. They cope badly and have them removed. They neglect and abuse them. They walk out on the other parent. They commit suicide. They commit murder/suicide. They stay in the home and scream and swear at their 4 to for not being like a "normal" child.
Ops partner isn't coping. My friends sons birth mother didn't cope. The women on the news who killed herself and her son didn't cope.

Perhaps we'd have more support for parents of disabled children if we accepted that like @OtterlyAstounding@OtterlyAstounding@{mention:OtterlyAstounding}ot@OtterlyAstoundingot everyone copes!

They exist because some children require complex care that parents can't meet.

The same parents who fight hard against the LA who would rather do anything else than pay for a child to take up one of these places despite the fact that they are heartbroken at the thought of their child not living with them but they push ahead with it and fight because they know it is in the best interests of their child.

To me that is very different than requesting your child to be put in care because you can't cope and/or don't want to be their parent.

Why is it different? The end result is the same. Love is not always unconditional and that's ok.

He’s being emotionally abusive towards his young son. He should realise that for himself and do something about it.

My amazing friends.

One had a disabled child and when they got the diagnosis they decided to foster another disabled child. Their daughter died, one of their foster children died, one grew up and went into supported living and they adopted the last boy.

Another had her kids and once they grew up, she fostered. Her now adopted daughter was physically harmed by her parents, which caused a healthy child profound and life long disabilities.
But I'm aware my friends are like gold nuggets. Precious and rare.

I also worked with a guy who chose to adopt a deaf girl because he knew statistically it would be harder for her to find a forever home.

Most of them remain in care.

Those people are truly amazing. I take my hat off to them and I mean that sincerely. Most people are very much not like that.