Husband resents ds with Down syndrome.

I’m sorry you’re going through this tough time OP. My ds doesn’t have Down’s syndrome but he’s autistic with a learning disability and he’s almost 11. He was in nappies during the day until aged around 7 then only came out of night time nappies in September last year. He was a smearer too which was just awful but M&S did some amazing adaptive night time clothes to prevent access which were a game changer.
we tried a few times over the years to potty train but he wasn’t fully ready. He has been at a specialist school since reception so it’s fairly normal for many of the children to wear nappies. I also have 2 younger ‘neurotypical’ children who are at a mainstream school and a few of their friends were still in nappies starting school and although a couple have some additional needs a couple don’t. It’s much more common these days and schools are usually set up for nappy changing when required. I think your son is doing amazingly well and you sound like a brilliant mum. There’s a website for potty training called ERIC that can offer toilet training information to parents and has a section to help parents of children with extra needs. I found some tips on there were helpful. But my view was always that my son would do it in his own time and he did.
I definitely do think your husband might benefit from some information courses. I do every course I can over the years and just having other parents to swap stories with to realise we are all experiencing the same highs and lows I’ve made some lovely friends doing the groups too and always learn something that helps along the way. Also maybe some talking therapy as from my own personal experience it sounds like he could be feeling depressed as is very common amongst us additional needs parents as life is not how we planned it, we had family therapy and it helped the children, my husband and I to realise how lucky we are even though life doesn’t look like how we imagined it.
lots of love to you xxx

I feel for all of you. For your son, who didn't ask to be born, for you who has to see the tension between your husband and son, and for your husband who presumably imagined having a child wouldn't mean having a disabled child with all the numerous extra worries and behaviours.

I don't think there's an easy answer. I think therapy for him to learn to accept his life isn't how he thought it would be might help, but you say he refused counselling, so that's difficult.

Did you and he know your son had DS before he was born? If so that must have been an extremely difficult decision for both of you to continue with the pregnancy. When I became pregnant I certainly knew and was very open about the fact that if I knew before birth that I was carrying a child with a life-changing disability I would have a termination, because I didn't want to live that type of life.
It's different if it was a complete surprise after birth because you just have to get on with it. I think whether he knew or not before your son was born will have affected how he is behaving now.

Sorry you are in such a difficult situation.

I can relate because I find that my DH seems to really struggle with our DD who is going through an autism assessment at the moment.

I also find it very difficult and I of course get things wrong but I don't think I struggle in quite the same way. Of course I do feel upset sometimes when the differences between DD and her peers are highlighted, or when we face exhausting practical challenges e.g. sometimes she won't wear clothes, but I think I have an underlying acceptance of the situation that he hasn't reached. He is not letting go of a vision he had about being a parent and is still, despite his experience everyday for the last 7 years telling him otherwise, expecting that somehow today DD will eat a spinach casserole, wear socks, play imaginatively by herself and go to bed without difficulty by herself at 8pm. So obviously he remains disappointed.

I also think, when things aren't going well, that I naturally assume this means there is something that I could be doing better. I analyse what I can change about me and what I'm doing. His default is always to wonder why other people aren't meeting his expectations, and not the other way round. Sometimes this is to a ridiculous degree - even when he is red in the face with a vein popping out and at the point of shouting, if I suggest that he should take a step back in that moment because be is not coping, he doesn't seem to be able to acknowledge at all that this is the case. He just persists in being aware that DD is causing a problem, but never reflecting that he is obviously furious and on the verge of a breakdown, hence not handling it well. In that moment he may actually believe he is a calm and reasonable human. It's awful, but almost comical on some level.

I feel like some of this has to do with being a man? I think women move through life accommodating people around them, and men move through life being accommodated, such that where they find they have to spend more of their time accommodating rather than being accommodated, it's a huge shock to the system. For women that's life, so this is just more of the same in a different context. I don't know. That's my theory.

I don't have any answers. I deal with it currently by being incredibly blunt with DH as in "You are doing a terrible job just now. Go away.", "When are you going to put in more work to learn about this so that you become able to deal with it" etc. but sometimes I apply a layer of humour on top. I don't think it's working really, but I basically avoid any mediating anymore. DHs feelings just can't be on my priority list. There is no room.

I'm sorry your DH's behaviour is completely unacceptable and you need to tell him that he is emotionally abusing his child by shouting by having unreasonable expectations and shouting at him and you will not stand for it. DH still has trauma from being abused for soiling as a young child with SEN needs. Your DH needs to agree to get some counselling to help him with his feelings or leave as his behaviour is unhealthy for your child.

DS is autistic he wasn't toilet trained by reception age and the school were fine with it, he didn't fully train until Year 2. DH is also autistic and phoned me at work one day panicking because DS had taken off his pull up and smeared poo over the entire sofa and the cats were walking in it. He didn't shout at DS, I just talked him through what to do and he did it. Told him to chuck the cats outside, put DS in the bath then once he was sorted give him something to do and sort the sofa. He managed. DH also struggled with DS's diagnosis because of his own childhood trauma at first but had counselling therapy and it helped him.

We had help from a specialist health visitor for toilet training so worth seeing if your area has someone in that role that can support. Get them to come and visit whilst DH is home too so that he can hear the expert advice if he is prepared to make a change.

I found this really hard to read I have a 4 year old and one of my older children has a little boy in their class who has down syndrome (he's in mainstream school and thriving), I just can't imagine any parent reacting like this to their 4 year old.

I hate the "you need therapy" bandwagon, but I do think your husband needs some sort of help, it sounds like he is grieving the child he thought he would have, but he's taking it out on the child you do have. Please don't let him do this, I know it is a really hard situation but it really broke my heart reading this having a child the same age, I can't imagine reacting like this to a 4 year old.

You’ve had a lot of answers and I’ve only skimmed because it’s late so might’ve been covered but: do you have a local DS group? Spending time with other kids with DS of a similar age and older would be so reassuring imo. Most children with DS are NOT potty trained at 4, it’s a long old slog. My DD (who also has DS) was finally trained at nearly 8 after many years of trying, and she wasn’t ‘bomb proof’ for a long time after that. It’s normal. Seeing other, similar kids might help? Have you tried social story for the changing issue? Worked with OT on strategies? We could only change standing up by that age.

Having said all the above… I’d find it hard to forgive your DH. We all have our moments of frustration, I am
by no means a perfect parent, but you don’t take it out on the child, that’s just not ok. Honestly being a single parent to a child with DS will be hard but… well, it might actually not be as hard as what you are going through now. So sorry.

Yes it was, I was in support of that poster but my comment didn’t come across that way.
Thank you.

Poor ds. Poor child. No matter what dh is going through, ds wellbeing needs to come first. I would have zero tolerance for someone mistreating my child. Awful behaviour

I’ve no advice my luv, but I just wanted to send a hug your way. It’s sounds like you’re trying to keep everyone and everything together ♥️.

Toilet training was the most stressful aspect of parenting when our daughter was young. She stayed dry straight away, pooping was a whole different ball game (and she isn't disabled). For you guys, this typically stressful stage is different level. So bear in mind that you're dealing with a stage that usually proves stressful for parents, but significantly more so given your boy's condition (thus try not to spiral on what ifs regarding how your husband feels/will feel).

The level of pressure you're putting on yourselves isn't fair on any of you. Communication between you and your husband is something you'll need to work on before having another go (I'd put the training on the back burner for now and work on the communication/plan going forward). Seek practical support too.

I think well intended impressions given to parents of children with a disability can lead to the frustration your husband is feeling at the moment; expectation may not match reality. It can be a very tricky balance, because children with down syndrome have a broad range of abilities, it sounds as though your son just isn't quite ready yet.

This is an incredibly difficult time for both you and your DH. You’re both exhausted. It’s good that he is able to speak openly and candidly about his feelings and grief. I think it sounds like you would benefit from seeing an occupational therapist to help you navigate your DS’s sensory processing and awareness of when he’s soiled his pad and strategies to respond to it because it’s becoming a traumatic experience for the three of you.

I really dont know if Im being unreasonable or if my gut is screaming at me for a reason.

I did read all of your post, but didn't need to read beyond this. Your gut is screaming at you. Listen to it.

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.

Does he think you tricked him into it? Does he think there is a get out clause in the contract? Depressingly, fathers often do just let themselves out of the "contract" by fucking off and walking away when the going gets too tough with disabled or ill children or partners. I'm gutted to be saying this, but I think you should consider the possibility that regardless of whatever you may want or do, this man may well already have one foot out of the door already.

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?

I'm really sorry. I don't have any good answers for this. Parenting course for him? He'd have to be open to learning that there is a better way than his, and potentially that his way is harmful. Making sure you both have protected opportunities to decompress?

I thought my disabled DS would never be out of nappies. But eventually got him out of them age 9. School helped as well as a learning disability nurse. Who put put me in touch with an incotinence nurse.

She suggested when he's sat on toilet to blow on something. He had a Thomas train when he blew the a whistle that's what made it go. But said he's only to use it when on the toilet. He was dry at night as well after a couple of weeks. Schools do make exceptions for SEN children. There's no blanket rule they have to be TT. If their not ready their just not ready. Can't force them.

Im an SEN teacher and my class all have DS. Some of mine are still not fully toilet trained, especially at night and they are teenagers. Im not saying this to scare you, quite the opposite. Your little boy is 4, some young people without SEN struggle to be toilet trained at 4. I think school will be a lot more understanding than you think. As for your DH , i actually really feel for him and you OP. I struggle sometimes from 9 til 3 and I can hand the children back. Its a really tough gig sometimes and not the life he expected.

Lovely post

I get lots of threads on Facebook where people post pictures of their children with DS, showing how great they are and what they can do. They obviously mainly show the good bits, not the stress and frustration. Unfortunately that can give an unrealistic expectation for others in a similar situation.

Your dh's feelings are understandable, his emotional abuse of your dc is not.

There is unfortunately no way a bad parent can be made to step up, but I'm furious on your behalf. It's so unfair.

Jesus, why should it be up to OP to manage her h’s emotions as well as look after their ds because her h has given up?

Expect more from men. Your bar is very low.

@BaronRock

I think at this point you need to find a quiet moment (if you can) and ask yourself whether or not it would be easier to parent DS if DH weren't there. It sounds to me as if DH thinks there's nothing wrong with the way he's behaving and therefore no need to change. I know you'd have to do it all yourself, but his attitude and his negativity are an emotional weight on you. And emotional weights can be so very heavy. Often moreso than the extra work involved in single parenting.

Just give it some thought. And if you decide you and DS would be better off on your own, that is NOT 'blowing up your marriage'. Your DH is the one doing that. It would be saving your sanity and your health and giving DS a calm and 'positive' home in which to grow and thrive.

Good luck to you.

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.

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.

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.

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.

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.

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.