Before you had children, did you spend much time thinking what life would be like if your child was significantly disabled?

[fiverabbitsplease]

I'm curious about this, because I am disabled since I was a kid, but in a lot of ways have had a very 'normal' life. However, I can't work full time which is obviously limiting, and can't safely become pregnant and carry a baby without serious risk to me or the baby - so my life is profoundly affected by my disability. It has shaped things in ways I didn't want, although I am lucky to have a very good life, relationship, friendships etc.

I also have a sibling with different disabilities who can't live independently.

I'm pretty sure my life experiences mean I think a lot about what would happen (if I just risked everything to do with my own health, and tried to conceive) if my baby was disabled. I'm really struggling with not being able to have a child of my own as I get into late thirties, so my mind is going down all sorts of wonderings about what would potentially happen if I threw caution to the winds and hope for a good outcome.

Anyway, that made me curious about how much the average "healthy" couple think about disability before the try for a baby? Is it something you thought about at all?

Thought about it a lot, mainly because I was being pushed at every appointment to have screening by hospital staff, which I did not want. It set me on edge for the whole of my pregnancy.

Most people I know with a disability/impairment developed them in adulthood.

Not really. I thought about it in a very naive and idealistic way.

No, to be honest, although I have had the harmony test on all my pregnancies due to my age. And autism was a worry for me.

But I also think dealing with any tough situations is somehow easier in it. From the outside you wonder how you’ll manage but in the thick of it you just do, somehow.

I didn't think about it. It happened. Somehow it just works but I think if I overthought it beforehand I would never have my amazing little girl. The thought and what ifs are far scarier than the living it.

We did talk about it a bit, and while we probably had that sense of assuming it would be fine, agreed that it was part of the deal of trying for a baby.

I didn't really think about it. I mean I thought about it to the extent that I knew there was a possibility the child would be disabled like with any child but I thought I'd keep the baby anyway. I didn't have any tests either cos I thought I'd keep the baby anyway and if I had a test I'd just worry and that's not going to change the outcome.

Not really.
I had an uncle and cousin with down syndrome, the 20 scan showed a thickness on DD's neck it crossed my mind then but I
wasn't worried as I wasn't scared of it.
Both of my DC have ASD it doesn't change anything they're both brilliant amongst the madness.
Thankfully we're on a good roll lately.

For my first I decided “no matter what” - for the second I had screenings because I knew I didn’t have the “capacity” to deal with it on top of everything else.

As it turns out, both are autistic - which would never have shown in screening.

A friend was adamant she’d terminate should anything untoward be show at screenings - the birth went wrong. There are no guarantees.

I used to work for a firm of solicitors that dealt with high value birth injury claims (CP) so it did cross my mind. I used to wonder how the parents did it and how I'd never be able to cope with the care needs of a disabled child. I felt lucky when DS arrived safely.

Was a huge shock when DS was diagnosed with DMD at aged 5. He's 16 now and has lost most of his physical ability so needs full time care. Turns out that although it is very difficult, it just becomes your "normal'.

Must admit I didn't think about it at all, didn't really occur to me at the time which is a bit strange really. Since then I've seen friends go through very difficult times including stillbirth and others whose lives bear no relation to what they thought being a parent would be like due to having a severely disabled child. I wonder how I would have coped, I wonder if they ever wish they hadn't gone down the path they did. And I feel grateful that I didn't think to worry about it because I'm not sure I would have had kids.

I’m disabled and thought about what life would be like for my child if they inherited my disability.
Didn’t think so much about other disabilities.
Though I refused Down’s screening as I wouldn’t have terminated anyway.
Consultant also asked if I definitely wanted to keep the baby at 20 weeks in case the baby had my disability. My disability is far from the worst in the grand scheme of disabilities and yes I bloody well did want to keep my baby.

I don’t personally know anyone with a serious disability (one which impacts their lives in the way you describe) but yes, this was something I thought about before falling pregnant and during. I was/am also acutely aware of how an accident, illness or unforeseen circumstance could mean my currently able-bodied children become disabled. I have had a TFMR (termination for medical reasons) as one of my children was diagnosed with a fatal condition and would not have survived for more than a minute or two after birth. I wished so hard for him to be “just” disabled, as long as he could just live. Sadly the sort of problems he had - missing major crucial parts of his anatomy plus many other linked issues - meant that it was never going to be possible.

I don't have children yet and this is one of the things that scares me most about having children. I think I could cope with a disability that required me to give up my life for 18 years, but I just don't know how I would bear giving up the whole of the rest of my adult life to be a carer: I'm just not selfless enough. The state of the social care system terrifies me and I'd be unspeakably worried about how they would manage after I was gone.

I think basically it would be okay if in spite of those disabilities they were going to be able to live an independent adult life, but if not I don't know how I would cope.

I'm mildly disabled myself (long term illness which flares up and down) but that developed as an adult and I live a totally independent life, that is really just normal. I have an acquaintance with cystic fibrosis who also lives a totally normal life: it hugely surprised me when I found out. But we also have a family friend who has a profoundly disabled son sang the strain it has put on their family is extraordinary. You can see the weariness in their faces and hear it in the voices and it scares me.

I recognise it might make me a weak or selfish person that I worry so much how I would cope but I think it's important to be honest with yourself for such big decisions as having children.

Never thought about it and it was a shock when my son was diagnosed. Life was very hard and still is very hard 36 years later.

Yes, we did. At length.

I grew up with a disabled aunt who lived with us and saw the impact that had on my parents.

Then my brother’s little boy was born very prematurely and had a brain hemorrhage which resulted in very severe Cerebral Palsy. I absolutely adore the bones of my nephews. He’s 20 now. But I can see the toll his disability has taken on my brother and SIL. They are physically, mentally, financially, and emotionally drained. Luckily, they have great family support but it’s so very hard for them. They worry constantly about what will happen their son when they’re old, or have died.

Ultimately, it was one of the main reasons we opted to not have children. Apart from the impact on us of having a similarly-disabled child, I always liked the idea of us being able to help out with my nephew’s care.

When we started TTC DH and I discussed downs screening and the abnormality scan and that we would abort the pregnancy if the baby had a chromosomal abnormality or severe problems identified on the scan. We also decided that since this was what we would do that we would pay for NIPT at 10 weeks so we'd know as much as we could as early as we could. But other than that we never discussed the possibility of our child being disabled.

Yes. Probably due to one of my aunts choosing not to have children due to her disabled brother (birth injury) and my age . We only used one salary for our mortgage so we could manage financially and decided what we'd do if something turned up antenatally (nothing with dc1 but abort with dc2).

Not at all, and I ended up having a child with disabilities. I personally think this is one of the many things that is wrong with society’s attitude to disability. The fact it was such a surprise to me is perhaps because disabled people are so not a part of mainstream media? I don’t know. Would be interested to hear what others think.

I suppose I did, in a very fleeting ‘I’m sure it’ll turn out ok, and it won’t happen to me anyway’ sort of way.

20 years on, with 3 dc with disabilities, I wonder where that naive and carefree person went…

I love my dc, but this is very far from the life I thought I’d be living (although, tbh, that is as much (if not more) down to exH being an utter arsehole, than it is the dc’s disabilities!)

I guess you’re going to attract posters with disabled DC to the thread so won’t get a balanced view, but my DS2 has ASD. I was an older parent for DS3 so had the extra scan (privately in those days) at 12 weeks to check for nuchal fold/likelihood of Downs. My (now)exH was adamant we couldn’t cope with a disabled child.

Then after DS3 was born, DS2 was DXed with ASD. I hadn’t even thought about ASD, didn’t know that it was often hereditary, hadn’t recognised ‘quirks’ in exH’s family etc. DS3 has traits as well, but at 20 just seems a bit quirky/geeky. DS2 is very much affected and at 22 hasn’t managed to get a job though he’s bright enough.

My marriage ended as well, exH was right, he couldn’t cope with a disabled child.

Never occurred to me. Everyone from both sides of our families are without disabilities , as far as we knew and didn’t really know any disabled people personally.

As our DC grow older and we learn more about him, we realise that we each know a distant relative like him but we hadn’t paid much attention because we were young when we saw them and only saw them once. It’s quite a coincidence

No, being young and fit (ish) I didn’t even consider the possibility. I can’t remember if we had the conversation about downs etc after screening but like others ours was a rainbow baby.

Not really, I worked at an adult day centre during my gap year and loved it but it cemented my view that I couldn't be a parent to a child with a disability as the parents I met were all knackered and so worn down by their caring duties. I decided I'd have all the screening available and would terminate a pregnancy if I had to.
Fate decided otherwise and I have a son and daughter with significant autism who are both now adults still at home. I love them dearly, but I am sad for them as well and after 26 years of broken nights I too am knackered and worn down.

Yes I did, but with hindsight I can see I was a little naive.

My dad worked with adults with learning disabilities and he would often take us to visit them. In addition my parents were good friends with a family with a daughter the same age as me with downs syndrome. As a result, I am quite comfortable around people with learning disabilities and knew I would never terminate a pregnancy for that reason. I opted out of screening. I confess I didn't think about physical disabilities very hard.

As it turns out, DS is autistic. I love him to bits, but I am less naive than I once was!