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?

I don't have a family history of disabilities, but I definitely weighed that up in my mind when considering whether to try for children. There are so many what-ifs and worries; this was one of many for me. I really questioned whether I would be up to the challenge, if I had a child with a severe disability.

No I didn’t, I don’t know a single disabled person so it’s not something I think about lots.

I have met a few people in wheelchairs (pub quiz group) and just treated them like the rest of the group. It must be tough as a parent and a child

Yes, it's the reason we decided to stop at two children.

Only briefly. Nobody in my extended family had a major hereditary disability. I thought there were certain disabilities my child might have where I wasn't sure I could cope, so I just tried not to think about it. I only gave it just enough thought to decide against most antenatal tests, because the conditions which were likely to be identified were ones for which I wouldn't consider abortion.

DH never gave it a thought, I'm sure. He's one of those "it could never happen to me" types. Which is kind of nice for me most of the time, because he is chilled and doesn't worry, and that has a calming effect on me. But I guess he did have a harder time than I in adjusting when our second child was born disabled.

Never thought it would happen to me. I feel so stupid writing that now but I’m being honest.

I don’t think that’s stupid at all. I lived most of my life with the same attitude and many of the things I thought would never happen to me/us, have actually happened. I’m kind of glad I had that attitude though, because of I hadn’t, there might have been things I decided not to do and I’d regret that now. I might have decided not to have kids if I’d thought we’d end up with a disabled daughter but my life without her wouldn’t be as good as it is!

Yes I thought about it a lot. I was working for a charity that supported disabled children so it was very much front of mind. My job involved interviewing parents about their children and the experience of raising a child with a disability. There was one woman I remember so vividly who was so angry with herself for refusing screening, not because she would have terminated the pregnancy but because she could have been prepared and spent the time researching and understanding what was ahead. Instead she had to make life or death decisions straight after her baby was born and while still in shock.

I also knew that extreme prematurity was a big risk factor for disability so that weighed on my mind while I was pregnant.

If I’d had a third child I would have been over 40 and I decided not to throw the dice again because of the increased risks.

It never occurred to me that I might have a disabled child. My mother died of a degenerative brain condition though so I had tests to make sure I didn’t have the same faulty gene.

@BoredZelda

Never thought it would happen to me. I feel so stupid writing that now but I’m being honest.

I don’t think that’s stupid at all. I lived most of my life with the same attitude and many of the things I thought would never happen to me/us, have actually happened. I’m kind of glad I had that attitude though, because of I hadn’t, there might have been things I decided not to do and I’d regret that now. I might have decided not to have kids if I’d thought we’d end up with a disabled daughter but my life without her wouldn’t be as good as it is!

❤️💐

Didn't think about it before trying to conceive. No disability in either family and we didn't know any disabled children. I was only 29 (although back then I was classed as an elderly prima gravida as I would be 30 when giving birth). DC1 born with a rare chromosome disorder with profound disabilities and limited life expectancy. So when having DC2 we thought of nothing else. There was no way we thought we could cope with 2 DCs with the same level of disability as DC1 had. Scans did not ease our worry in spite of there being no anomalies. As it turned out DC2 was diagnosed with ASD at the age of 6. So I guess we were both niave.

I thought about it a lot. So I researched lots & ended up reading reams & reams of threads on a (not this!) forum written by parents of disabled children and what shone out of them was how much they loved their children & I knew I would too.

Additionally my family includes tragically young accidental deaths & life destroying mental illness that onset in teens so I knew that a healthy baby may not remain that way.

Interesting thread OP

The thought of physical disabilities never really occurred to me, but I remember before my first wondering how we would cope if we had a severely autistic child.

With my last pregnancy I was a bit older and anxious about the increased risk of downs syndrome.

Thought about it a lot. Had all screening.

Both me and my dbro have dc with different SEND. Neither could have been picked up in current screening.

With my first DC at 20 it didn’t occur to me that anything could be wrong until I was offered an amniocentesis which I refused because I knew I would love my baby no matter, in all honesty I was very naive. I then worked with children with profound disabilities and although that opened my eyes to their struggles it also opened my eyes to their beauty and the joy they brought people around them. I had a couple of miscarriages and then with my next two pregnancies I worried about them going full term, in terms of disabilities I know I’d have done my best no matter what the outcome.

Yes, for various reasons, we gave it a lot of thought and had all the screenings possible. We still ended up with an autistic child though. I wouldn't risk having another child, it's not worth it.

It never crossed my mind. My first was a contraception failure at a time when I wasn’t even considering children. My second was planned and I didn’t really think lightning would strike twice so to speak.
Both my children have autism and global developmental delay. My youngest is profoundly disabled by it. She’s non verbal, her autism is classed as severe, she has pica and I’m fairly confident she’s hypermobile so her walking isn’t great. She’s also the most amazing, wonderful, creative and frankly barking mad little girl I’ve ever come across! I wouldn’t have her any other way. I just wish the people who give me pitying glances could see that.
My oldest is verbal and doing well in mainstream school. He’s always going to have challenges, particularly with emotional regulation and change but I’ll always try and be there for him and help him in whatever ways I can. I sometimes think it’s easier for his sister. She hasn’t got the understanding that the world is anything more than she sees. He does though and he has to constantly adapt to environments that test him. I wish I could wave a magic wand and make the world fit to him, even for just a day.

My DS 13 has ASD and needs care, he can do some things himself but even the simplest of tasks is trivial for him, luckily we have a great support system in my mum who is his other main carer but routine is key with him, I can’t just go away for a weekend, we went away for 3 nights without the kids for the first time in 7 years to help FIL who is vulnerable. He kept messaging because his routine had changed slightly and it put himself out. Everything we do has to be thought ahead.

Yes we talked about it. A friend had been pregnant the year before and was told there was a high risk her baby would be disabled so we talked about it in that context and then in the context of scans and screening. Being an 'older' first-time mum, we knew there were increased risks.

Yes. Significant disabilities in my family. Was a major factor in deciding not to have children of my own as there is a genetic component to one of the disabilities, which is life limiting and incurable.

Yes absolutely. My little sister was born with DiGeorge Syndrome and passed away at the age of 20 just five years ago. My parents underwent genetic testing after her birth in the 90s and they went on to have our little brother who has no congenital issues. Saying that I was terrified during my first pregnancy, despite the fact I knew her syndrome was not genetic. She was a completely random case, bless her. One of a kind. But I have witnessed first hand what my parents gave up, their sacrifices, how her disabilities could cause huge strains on our family.

In fact we were with a private healthcare provider during my first pregnancy abroad and one nasty doctor decided to take advantage of my "family history" and tried telling me DS had a VSD. Suffice to say he did not and does not and we had 3 other people confirm that. Obviously the trauma of losing my sister and then to have someone try to manipulate that for financial gain caused me more major anxiety.

Thankfully first DS and now his super fresh little brother are both fine and without any congenital defects.

We made sure we were in a financial situation that we could live on one wage before we had a baby. We were both planning to work when we had children but wanted to know the option was on the table. There was no discussion of disability beyond having the tests offered and them being clear.

Our first child was born with severe brain injury due to the birth. I remember in the hospital thinking this is not what I thought motherhood would be, but at least we can do it. Sadly she only lived for a few days as she was so badly affected.

I find it really emotive when I hear parents of children with severe disabilities talk about their lives. It must be so tough.

Having not really known any disabled people I was incredibly naïve and it didn’t even cross my mind that there was a risk of us having a disabled child. I foolishly thought disabilities must always be genetic / caused by chromosome problems detected before birth….so it came as a real shock when out of the blue our baby was deprived of oxygen at birth and we were told had suffered brain damage and might die or be severely disabled.

We were incredibly lucky with the brain cooling treatment available now but ten years ago it could have been a very different more tragic outcome.

It has really opened my eyes to the causes of disability and made me realise it’s not just something that happens to other people…can’t believe I ever thought that way!

@OwlinaTree

We made sure we were in a financial situation that we could live on one wage before we had a baby. We were both planning to work when we had children but wanted to know the option was on the table. There was no discussion of disability beyond having the tests offered and them being clear.

Our first child was born with severe brain injury due to the birth. I remember in the hospital thinking this is not what I thought motherhood would be, but at least we can do it. Sadly she only lived for a few days as she was so badly affected.

I find it really emotive when I hear parents of children with severe disabilities talk about their lives. It must be so tough.

That's terribly sad, I am so sorry.

It is tough. I rarely talk about my experience because it's upsetting and also I don't give details for privacy reasons, but having seen it and lived with it first hand, and then had genetic screening and found out there was a chance I could pass the condition on to a child, I decided to remain childless.

Thank you backbackback.

Not really but I thought that you get the child you are given and get on with it the best you can. Ds is severely disabled ( autism and learning disabilities) and will always need constant support. Our life is nothing like it would have been if he had not been disabled but there is no point in thinking about that.

Owlinatree I just read your post, I’m so sorry that happened to you x