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I'm probably mad, but what are your experiences of planning/not planning further children if one of your DC has severe disabilities?

(24 Posts)

We'd always thought we'd have three children. But when our second was born it soon became clear his path would be different, which complicated things and we still just have two.

At 28 months, DS is undiagnosed but has significant global delay, epilepsy, hypotonia, thyroid problems, unknown visual and audiological function. He is happy, social, easy and all round brilliant but also massive hard work with therapies, physically lifting, constant appointments and the emotional worry about the future/potential for him to have a seizure and stop breathing at any second.

We also have a DD who is 4 and developmentally typical.

For some reason, these last few weeks I haven't been able to shift the thought about having another child. There are lots of practical reasons why we shouldn't. DS's condition could be genetic and affect future children (we don't know), DH works away, I'm already pretty stretched with parenting, managing DS's difficulties and being self-employed while DH works away, money, my pregnancies and births were not exactly a doddle etc...

But I'd love DD to have a sibling she could actually play with. And I don't feel like our family is complete.

DH and I have talked about it and are undecided. There are huge risks. It could literally make or break our family I suppose. I guess I'm just looking for thoughts and experiences really, all welcome, TIA flowers

chocnomore Wed 28-Aug-13 19:00:39

we decided against another child. for me it boiled down
to the question as to whether I could cope with another child with additional needs and for me the answer is no.

but we e do not have family nearby to help, and both DH and I are working. there is no break, no respite at all for us and we are often struggling with things as they are.

if you worry about a genetics, you should be able to get a referral for genetic counselling and possible genetic testing. have you asked about it?

Thanks choc, we do have my mum nearby who is a great support. It is a struggle though.

DS has been through extensive genetic testing that has provided no answers yet. We have seen four different geneticists. None of them has been able to diagnose nor rule out anything genetic. They have told us our chances of having another child with the same condition or similar could be 1:1,000,000 or 1:4. They just don't know.

wannaBe Wed 28-Aug-13 19:31:24

I don't have a child with sn, but I do have a disability and my parents decided that they didn't want to have any more in case another child too had a disability also.

One of the deciding factors for my parents was in fact that of non diagnosis. My visual impairment did not have a specific diagnosis but it was believed at the time that it was in fact corticle meaning that it was somewhere in the brain. My mum's fear was essentially that if it was an undiagnosed brain condition, next time could be worse and lead to more severe disabilities.

As your ds as yet does not have a diagnosis, the question you would need to ask yourself is, if you had a baby who was more severely disabled than your ds, could you cope with that?

Ultimately there are no right or wrong answers, some people have severaly disabled children and go on to have more without knowing the risk percentage, others feel they don't want to take that chance again, others know the risk and go on to have more children anyway, and ultimately it comes down to what works for you and your individual circumstances.

Ime genetic counselling is very ineffective unless you know what conditions your dealing with. My xh had a genetic condition which had a 50/50 chance of passing on to our children, although I didn't have counselling as such (I knew the risks and if anyone was best placed to deal with a VI child it was me), but I did speak to a genetic nurse who told me that of course they could discuss the current conditions in the family (there is more than one in xh's family), they couldn't talk about my condition as it was unknown as as such the risks were unknown too.

Yep the non diagnosis is a biggie. I'm trying to imagine what life would be like if a third child was more severely disabled than DS. DS can't walk, talk or feed himself and has potentially life threatening epilepsy, but he is generally healthy at the moment, he's not tube fed and doesn't require a million different meds a day. He can play, he interacts, he doesn't have major sensory issues so taking him out is easy... I know our lives would be far harder if we had these issues to deal with too.

Oh I just don't know. If someone had said to me a few years ago 'you will have a child with severe disabilities who may never walk or talk' I probably would have been too afraid to have children at all. But here we are, doing it, coping and really happy. Not having another child out of fear for how bad it could be doesn't sit right somehow.

Equally I wonder if I'm just desperate to try and clutch to a little normality. Typical families in our situation would just go ahead and try for another kid. It's tearing my heart out that we can't just step into that decision with joy and excitement.

I had a 3rd for these reasons:

I didn't want dd to feel soley responsible for ds when we were gone.
DD had been such a boost to ds that I felt another child could do the same.
I felt strongly that I wanted a third.
I wanted another playmate for dd.
I no longer felt 'entitled' to a typically developing child and didn't think another with a disability would be quite the shock that the first was, though I was scared at the prospect.

Strongecoffeeismydrug Wed 28-Aug-13 21:34:54

I chose not to have a third as I'm pretty stretched with ds.
Also I have a large age gap between my 2 kids so I'm knocking on a bit nowshock.
I will just wait patiently to become a granny grin

I have that strong feeling Starlight. I always imagined three and I know 100% that if DS didn't have the difficulties he has, and the associated work, hours and emotional toil, we wouldn't hesitate to try for a third.

I feel awful that the only thing holding us back is DS's disabilities sad. All the other practicalities would be surmountable without these challenges to consider.

I'm 34, so a bit of time to think, but not much...

Oh and the other thing that persuaded me was that even if my 3rd WAS typically developing, I'd already experienced the fact that life could be cruel. My DF also died just before my 3rd was conceived and I had been treated horrendously by the professionals paid to help us with DS. Any one of my children could be affected by other things, health of otherwise. I decided that life was kind of what you make it in the end.

BTW, Not telling you you should go ahead.

I'd like to say that you have to be certain, but that doesn't make any sense and we definitely weren't. We were 'shall we?/shan't we?' for ages. And ds was conceived on a 'shall we?', and I got a positive PG test on the 'shan't we', though it was neither a shock nor a disappointment.

Thank you Starlight, I really appreciate your frankness. It's something I can't talk about with my 'non-sn' friends at all as understanding as they try to be, I don't want to bore them with the multitude of issues that go into our decision.

I'm definitely of the 'life is what you make it' mindset although there are days when I just think crikey I can't cope, and I don't want to be irresponsible and overload our family on a selfish whim.

I think the key thing for us was that dh really does pull his weight with the kids. Not with other stuff, and the kids are still sleeping on the floor though we moved in in May and their beds are still flatpacked in the living room, but again, what is more important?

And for at least the first year of having ds, DH would sometimes stare at him and each other and wonder 'what WERE we thinking?'

And I've never been so tired (though I think that is also to do with coming down from running on adrenaline after an 2.5 year battle for eldest ds) and we did have ds when our eldest was 5, and next was 3.

But I'm definitely over my wanting another child thing, and we'd never give our baby back. I love watching all 3 play together.

I had a third by mistake (ds1 is severely disabled).

I cried when I found out I was pregnant & had to find a way to switch off the worry/searching for conditions in the first couple of years. He's fine btw

I am very pleased we have him now, ds2 & ds3 have a typical sibling relationship & both look out for ds1 & have a good relationship with him.

The early years were crazy. I could not go out alone with all 3, I couldn't even get into the car without having ds1 on a harness & ds3 in a sling (couldn't leave ds1 in the car or house alone). SS did start to provide direct payments when ds3 was born so I started to pay for an extra pair of hands. (DH reasonably hands on with kids but works long hours)

hazeyjane Thu 29-Aug-13 08:20:04

No real advice, starship, as i think dh and I were lucky that ds was our 3rd, so the decision was taken out of our hands. I do feel incredibly lucky to have all 3, because when things have got tough with ds - appointments, ambulances to hospital, meltdowns etc - the girls have got each other, they are very close. I am finding the fact that ds is going to a different school to them tough, but they are a year apart at school, and actually it is probably a good thing that they have that world away from worrying about ds (and they do worry). I hope it will also make it easier when they are older, as there will be a shared responsibility. On the other hand, there are days when i have to put each of them in a separate room before they kill each other, and i stick my head in the wardrobe and scream - but I am saying this at the end of the Summer holidays!!

The really difficult thing is the not knowing about the genetic connection, and that really will have to be a leap into the unknown.

Whatever you decide, I wish you tons and tons of luck.

autumnsmum Thu 29-Aug-13 08:43:35

I had a third and while I love her dearly it is hard dd1is nt ds has high functioning autism and dd2 is more severely autistic for me personally I have found the third child has made life reSlly really hard .However that is just my personal experience

MovingForward0719 Thu 29-Aug-13 11:02:58

My age is the deciding factor for me. We have two age 9 and 6, the youngest has ASD. If I was 10 years younger I would risk it. I wish we had 3 but I can't go through it again.

Thank you all, argh I'm crying at my own thread blush.

Ironically yesterday DD and DS whinged and tantrummed their way through the day (way worse than normal) and yet I'm still wanting another hmm.

Those practical points about getting all three children out of the house at the same time are a huge concern. Even with a hypothetical DC3 with no developmental difficulties, managing DD, DS not able to move his own body plus a baby on my own while DH works away probably isn't a brilliant idea. Or even just being heavily pregnant under those circumstances and having to carry DS everywhere. He's big now, and very very floppy and needs everything doing for him.

I woke up this morning with hideous back pain, maybe a warning from on high about not taking on too much, I don't know.

I wish I could just magic a third child into our lives. Of any age, any gender, any ability. I see the girls who live next door and long for my DD to have that kind of sibling relationship. DS is happy and adores his sister, his world is complete, it's DD I feel for. She doesn't have cousins to fill that gap either and I worry so much for her being lonely and overdependent upon friendships for the level of support her family should be able to provide.

MovingForward0719 Thu 29-Aug-13 13:25:19

Are you able to get any extra help? I really feel for you, I feel the same about my older son, it must be hard for him sometimes. I took him to see my nephew who is only 3 yesterday and he had to make fewer allowances for him than he does for his brother. Two is manageable though, we often take it in turns to do stuff with my older son that my younger one can't access. It's not ideal but at least we can do it.

StillinMyPJs Thu 29-Aug-13 14:54:26

Geneticists told us that there was probably a 1 in 4 chance of another child having the same condition as ds1, although they did not know what gene it was or the inheritance pattern. So DH and I decided to go ahead with dc2.

We had non identical twins and unfortunately they both have the same condition as ds1. So now we have three with significant additional needs and we still have no idea of what the future holds for them.

The twins are just over a year old and it has been tough coming to terms with the situation. Life is certainly not as I had planned it would be, but these are the cards that I have been dealt.

We are certainly not planning any more!

hazeyjane Thu 29-Aug-13 15:24:26

Sorry that you are finding it so hard, I don't think it will ever be an easy decision, but wonder whether giving yourself a year or 2 to think about it would be an idea. As you say, you are still young, and things may have moved on a lot for ds. I can't believe how different things are with ds now to a year ago, and maybe there might be more answers from the geneticists.

Hope so hazey, thank you smile. Head reeling today with other possible causes of DS's difficulties now although deep down I still feel it's probably something gene based.

Some thinking time will be a good idea. I would so love a big family if we can.

Maybe once DS is in school too I'll know. If I start looking longingly around the house wishing there were babies and toddlers everywhere then it will become clear!

hazeyjane Thu 29-Aug-13 18:58:55

Just seen your other thread, Starfish, can see you have lots to think about.

School time, could be a good time to review, dd will be all settled in and you will have more of an idea about ds, and hopefully have a wonderful statement and school place sorted for him!!

BigTootsy Fri 30-Aug-13 12:58:22

I'm in a similar mind frame to you starfish, DD is classed as severely disabled, but I desperately want another child. We have been given odds of 1 in4. it's an unknown genetic condition. I would love for her to have a playmate. But I don't think I could cope with the worry through pregnancy, and if it happened again I don't think I could forgive myself. DD was so unwell and in so much pain for the first year of her life, it still haunts me now.
This is a hard decision to make. Based on what someone said up thread, to think if I could cope if we had another DC with the same condition, my answer is no.
I wish you luck with coming to a decision. I am thinking about looking into adoption. But that could be in a few years time.

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