To be so worried about having a disabled child

[igglepigglestiddle]

I have a nearly 3 year old DD with additional needs, who is is delayed in all areas of her development. Her first year was awful - she was extremely difficult to look after and I found it very hard to come to terms with her disability.

Since then, though, life has been better. DD is non verbal and her behaviour remains very challenging - but we love her, we have good times together as a family and we are managing. DD still has no known diagnosis for her difficulties although we are having genetic testing to try and identify one.

DH has always been keen to have another child, but I have wanted to stop at 1 - DD takes up all my energy and I’m not sure I could manage another. I have, however, been stupid and careless (literally once!) and am now pregnant again.

I am now absolutely filled with dread about the whole thing. I’m worried we won’t cope and really worried we will have another child like DD - and this has stirred up all the dreadful feelings I had about DD early on. I really thought I had made peace with it all - but clearly I haven’t if I am so worried about having another one?

I haven’t told DH as can’t face him being pleased about it - and I’m being dreadful to both him and DD. How do I snap out of this and get on with life?!

You don't have to snap out of it and you absolutely don't have to have a baby if you don't want to!

I have a daughter who was like that at 3, sounds similar. It was the darkest age, the unknown. Plus she developed seizures.
However it’s all an unknown at this time. At 4 my daughter was assessed with the understanding of a 12 month old, no speech either. She spoke at 4.5. Her comprehension is now good. She’d probably be best placed in the selective mute box at age 11, we chat at home and she does with friends. She’s a quiet person but happy. She’s small, quirky but happy and certainly functions in a way she’s happy with. She’s beautiful and so loving. I don’t really think of heras disabled, she’s come so far. She can certainly be disabled by her environment, but inherently she has No deficiency. Her behaviour has gone from nursery exclusion to calm. She’s a joy and of our 5 the easiest to live with in many ways.
It’s hard to get through because it’s unknown. Of her friends at 3 one remained nonverbal and developed challenging behaviour. The other is progressing averagely in mainstream.
The skill is to live in the now. It’s now easy, but no one can see the future. Don’t fit in anyone else’s box. Drop groups that don’t work quickly, find things that do work. Don’t feel you have to do anything. There are many wonderful accepting groups out there. If you have to try four swim schools, 3 rainbow guide units or another nursery just do it.

Sorry stopped too fast.
regarding the second child, live in the moment too. You don’t have to give anyone your future choices. If you don’t want one now, don’t. And just say that. ‘I’m happy now, I don’t want to change anything right now. I don’t know how I feel next year’. You owe no one that decision

This sounds really hard and your feelings are completely understandable. If you haven't had any already I'd really recommend some therapy - to process and deal with your feelings about the challenges you've had with your first child and also to manage your anxiety about the next.

Therapy can be hard as it forces you to face the difficult and controversial thoughts you're having but by talking them through you can understand them and move forward, and hopefully ultimately making you a happier person and mum. Wishing you all the best!

I feel the same as you OP. I couldn’t risk it again it if I was you.

I am not in your situation OP but I have had 2 unexpected pregnancies, Pregnancy counselling was brilliant for me. I highly recommend it. Even if you just go and sit in tears for the whole session.

I think your worries are perfectly reasonable.

I know your DH wants another child but who does the day to day care of your eldest? Who manages her appointments, therapies? If it's you, would he be willing and able to do the same for a second child who had disabilities? Have you talked about this?

You don't have to continue with the pregnancy. I would make an appointment today with a counsellor who is supportive of all routes you might decide to take going forwards.

Have you had genetic tasting with first dd? If you have a high chance of having another with same disability I’d think about all options.
The statistics of marriages failing when you have a dc with a disability are high. It’s usually mum left caring. If your dc1 is high needs could you cope alone with two. If dc1 will need lifelong care and another dc would detract from that it’s a conversation you need to have.
I have one dc with a physical disability. For me one was the correct decision but it’s a very personal decision.

This! I assume it’s early days and you can seek an abortion?

Many people will disagree but as the final choice to continue with the pregnancy or not is entirely yours, I believe its OK to end it without telling your husband about it if that's what you feel you need to do and if telling him will cause huge problems.

Lone parent to a child with additional needs here. I obviously am not currently planning any more children through the means of immaculate conception 😅 I would have loved more children before it became apparent mine had needs, now I don't think I would. If I was to meet someone I can't say I wouldn't reconsider, but I'd imagine it would have been way further down the line when I saw what the future held for my current child. Don't get me wrong, wouldn't change my child for anything, but if I had another child and then they also had additional needs or ended up a lone parent again, I'd find it hard to cope, one is plenty in my situation. I hope your husband comes to see that it may not happen, you can't be forced to change your mind, especially if you're primary carer. Sending you love.

If you don’t want another child don’t let yourself be forced into it. Do what is right for you and for your Daughter.

I wouldn't continue with a pregnancy in your situation, @igglepigglestiddle. Get to the bottom of the genetic issues with your dd then think about it again.

If you don’t want another child then don’t have another child. You may be pregnant but you don’t have to continue if you don’t want to. The fact that your husband would be pleased doesn’t mean you have to be, or that his feelings are more important than yours.

In fact I think you could make a very good case for correcting this "misstep", working on the premise that you would think about it again once you have an answer to the genetic question, and your daughter is a year or two older.

If the issues you're dealing with are global, unknown, and exhausting, it seems a little reckless to put your daughter through having a baby sibling before you have set up a stronger knowledge and have got into your stride.

I don't know, just some suggestions on how to frame it.

'The skill is to live in the now.'

This is terrible advice. The 'tomorrow' will inevitably come and you will have to deal with it, so please don't live in the now.

YANBU to feel this way! You can love DD completely and still hate the disabilities you all have to live with. Pls don't feel guilty about your feelings.

If your marriage is strong and things are OK financially you will be fine. DD is growing every day and new baby will bring so much joy into your lives, put as much resources you can into extra help and tell your DH your fears. I know this differs from PP advice but that's my take on it. But for now maybe process a little before telling DH and maybe counselling too.

You still have the option, if early pregnancy

Don’t feel you have to go either way

@AmazonAmazibe Such a lovely post to read, I'm glad that your daughter is doing so well now.

Absolutely this.

Be kind on yourself OP, how you're feeling is perfectly natural. I'm sure if you continue then you'll cope admirably with whatever life throws at you, but your worries are absolutely valid.

Best of luck

Thanks all for some kind and helpful comments. For context, I do plan to tell DH about the pregnancy. I think terminating without telling him is too big a thing to hide and would ultimately have a corrosive effect on our relationship - I’m not sure I could live with it. He will be extremely upset if I end the pregnancy but I’ll have to cross that bridge if we come to it.

I’m also not completely sure in myself that I do want to terminate - I have huge anxiety about the prospect of another baby but also in some ways wish that we could. I’m from a bigger family and always used to want more than one child - plus DD might actually benefit from a sibling. It sounds awful but I’d also love to have the experience of having a child that other people do - although I am well aware that it a) isn’t guaranteed and b) may not actually be better - many parents of typical children seem very disillusioned with the experience!

Further context is that (despite my apparently amazing fertility right now!), DH and I aren’t young. It is far from certain that we will ever get a result from DDs genetic testing and if we do, it may not be until I am really too old for all this!

Also, for those who asked, I do most of the childcare. DD doesn’t have loads of therapies - just speech and language - but I am her primary carer. Just to add to the fun, I also work part time (3 days pw) in a reasonably high earning and responsible job. I have only just managed to get my career back on track and my work will not be delighted if I go for another maternity leave!

I know what she means by ”live in the now” though!

@NurseEssie i don’t know if you have a disabled child? I think when you have a typical baby, people don’t stand over their crib and tell you all the things that might go wrong in their life - but when you have a disabled child that’s exactly what they do! The fear of the unknown can be overwhelming, and the only way I have found to deal with it is to not look too far ahead.

Remember this is my life, how I cope is not ‘terrible’ if I am happy

So much to consider here @igglepigglestiddle and I really feel for you as your clearly having a heart and head situation.

Is there anyone you could talk to professionally regarding having two dc with additional needs or one with and one typical?

There are so many things and people to consider you must be really feeling some weight with this.

Maybe your dh can try and understand what your main carer day to day looks like to see how realistic it would be with two?

I have 2 severely disabled DC (very close in age, so we didn't know by the time 2nd was born). Genetic testing didn't show anything.

Abortion is a highly personal decision but I think you should be realistic about what your life might look like with 2 DC whether the next child develops typically or not.