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?

Yes, we discussed it at length - I'm Catholic, and I'd not terminate for Downs (for example).

We agreed to terminate for a condition incompatible with life like Edwards or Patau, but were aware and in agreement that we would just have to learn to cope with any other disability.

I am currently pregnant, we are healthy and its a standard low risk pregnancy. Everything scan related is normal, baby growth is in 50-60th centile for everything.

Honestly i think about it. a lot.

I have experience of severe autism (as in totally non-verbal requiring full time carers) via close family members. It was a consideration re children even as a teenager. My worries are not eased by the fact my FIL has very obvious signs of autism.

Ultimately, it will be what it will be and we will love our baby.

Yes, because I'm a Midwife so this has been a reality that I have seen throughout my career for a lot of parents

No, we didn’t discuss it at all. I was 21 when I fell pregnant, my dp already had 3 children and it didn’t cross my mind really. I assumed I would have a child and everything would be easy, I pictured them growing up, getting a job, leaving home and getting married. It was a total shock when both of my dc were diagnosed with several conditions. I never pictured my life would be like it is now, having teenagers that still rely on me for most things, having to see them go through pain, hospital appointments, physio and surgery, knowing at least one of them may never live independently. I never expected to be fighting for education, never pictured my child having to travel 2 hours a day to attend the right provision. My life is very different than I ever could have imagined.

For DC1 and dc2- not really?

I was fairly naive when it came to planning dc1, and a very small gap between her and dc2.

Turns out dc1 has asd. Her needs aren’t severe- she’s a great sleeper, doesn’t have melt downs etc so we don’t have the same stresses as a lot of parents with kids with the same condition. But even the whole diagnosis process, applying for DLA and the hoops you have to jump through to get her the help that she needs is emotionally exhausting.

DC2 looks to be neurotypical, and we have every reason to believe that DC1 can achieve a good level of independence. Although I’d love a third, I’ve had my eyes opened that SEN parenting is a fucking anxious rollercoaster of a SLOG.

No, TBH. But, I think my story might be relevant.
My DC are in their twenties now - and I had fertility issues. I had the standard tests at the time, which didn't indicate any possible problems with either pregnancy.
DC1 had suspected Down Syndrome when they were born, which was later not found to be the case. But, they have gone on to have two autoimmune conditions, one of which is life-threatening, but luckily they are in remission. The other is lifelong and is life-changing. I don't know whether or not they will have children in the future.
DC2 was born with a significant genetic disability and is adamant (at the moment) that they won't have children.
I feel for you, as the mother of two children who may both go on to never have children. (Not for my own sorrow, but for my children.)
But, I would say this to you:
Live, and live well. If you still want to pursue the idea of having children, talk a lot to your healthcare team. If you need to, ask for second opinions. Then, ultimately, only you and your partner can decide what course you want to take.
I wish you the very best of luck, whatever course your life takes.

I was a carer for a profoundly disabled child, and when I became pregnant, I occasionally would get really overwhelmed with anxiety over thinking about it. Yes, some disabled children lead full lives and are a joyful addition to their families, but some take all the focus off their siblings, need round the clock care, injure themselves frequently (or others), never sleep through an entire night their whole lives, require intense medical appointments and therapies ...and all their parents get is £147 per week to care for them full time. I saw the reality and was really worried about it.

I have a friend with a severely disabled child.

Our children were born a few months apart and I’d say at about two to three, it became apparent something was wrong with their son, he was not meeting his milestones, aggressive and non verbal. Aggression to the extent that as he kept hurting my daughter I had to keep her away.

He went through so many tests as they couldn’t work out what it was, it was a very rare syndrome and it turned out to be inherited, which meant that any subsequent child had a fifty fifty of also being born with the same syndrome. He was diagnosed at about five.

He is now in his early twenties, lives in full time care, and has to have two carers twenty four seven. I can honestly say her life was consumed by it and so difficult he grew to be a big lad and hurt her a lot. As in he really, really hurt her, she had to become a full time carer and her husband worked and she was physically assaulted on a daily basis. He cannot care for himself in any way. .

He had to go into full tome care as it was unsustainable but they tried so hard and love him with every inch of their souls.

They elected to have another child, even though the consultants had warned them it was a fifty fifty. I remember them telling us they were going to ttc and would take their chances. The second child was born with no disability,

But all his life was spent in the shadow of his older brother due to his additional needs, and how those needs dominated the household and their parents attention, and I have to be honest, I’m not sure it’s a decision i would have made and I’m not sure I understand it either. Then or now.

Even now when we see them. It’s still all about th older child, and the younger, in his late teens, is basically left to it. He’s a lovely lad, but his life has been overshadowed by his older brothers needs, it’s never been about him as an individual.

I don’t know, but this is one where my husband and I, as close as we are to them, struggle to comprehend the decision they made, we have never questioned it obviously, and would never say anything, but privately it’s something we both struggle to comprehend as we watched that younger child grow up and be treated like an afterthought.

Yes, my husband and I discussed it before TTC. We are both of the view that if we conceived we would keep our child no matter what disabilities they might have. We saw that as part of the lottery of having children. A disabled child would still be our child.
We refused testing for Downs and Edwards etc. It wouldn't have made a difference to our choice to keep our child. We'd already made that decision when we chose to try to conceive.

@MatildaJayne
It is a difficult situation for many women although I'd two family members who had down syndrome and I was quite naive with my first thinking I'd cope.
My auntie had a very tough life looking after my cousin for 35 years, his sister had a late abortion in the UK when she discovered her baby was disabled.
I don't think anyone can know what they'd do until they are faced with it.
It was the right choice for her.

@TerribleCustomerCervix

For DC1 and dc2- not really?

I was fairly naive when it came to planning dc1, and a very small gap between her and dc2.

Turns out dc1 has asd. Her needs aren’t severe- she’s a great sleeper, doesn’t have melt downs etc so we don’t have the same stresses as a lot of parents with kids with the same condition. But even the whole diagnosis process, applying for DLA and the hoops you have to jump through to get her the help that she needs is emotionally exhausting.

DC2 looks to be neurotypical, and we have every reason to believe that DC1 can achieve a good level of independence. Although I’d love a third, I’ve had my eyes opened that SEN parenting is a fucking anxious rollercoaster of a SLOG.

Yep. Not having a third.

Yes. I'm the (adult) child of a profoundly disabled parent. Thought long and very very hard about the risks.

My DH and I decided that we would terminate if we knew there would be significant disabilities during birth. Selfishly, depending on the disability, we also decided that we would use residential homes. I love my DC, but I don't want to give up my life for them.

Yes, we did: no disabilities in close family, only in wider family, but we were older parents. Discussed before DC1 what we could cope with. It all seemed OK, DC1 diagnosed ASD as a teen, DC2 & I fell down stairs when they were a baby - fractured skull, really worried they would have lasting damage, but all OK - so things can change in a moment at any time.

Nope never considered it tbh but my daughter wasn’t planned, she’s autistic and there is no autism in mine or exes family (as in no one diagnosed or suspected) so I was quite shocked, now I have another child with autism as well.

Yes. DH and I discussed it in the run up to getting married - I had found a list somewhere called something like "30 things you should discuss before marriage" and it was on there.

My brother had also been very poorly at birth and then for a few years after he was born and it changed the entire course of our lives (my mum left her career, we moved continents etc all as a direct result) so when we were having kids ourselves it was quite present in my mind that things can go in unexpected directions at basically any stage of a child's gestation, birth and development.

@rhowton

My DH and I decided that we would terminate if we knew there would be significant disabilities during birth. Selfishly, depending on the disability, we also decided that we would use residential homes. I love my DC, but I don't want to give up my life for them.

That’s not selfish, it’s honest.

No, we discussed the possibilities but ultimately we wanted a ‘family’ and a ‘family’ consists of many different people with different needs anyway.

Before DS we thought about things detectable at the 20 week scan and what we would do.

I then had a MMC of a planned pregnancy. After that our thoughts turned to how it would affect DS if our second had any sort of disability and we decided to leave it as we had one healthy child.

I thought about it a lot. I work with people who have disabilities which obviously brought it into our awareness more.

Now pg again and less anxious despite DD turning out to have some mild additional needs. I'm just getting on with it like many second time parents.

Some of my clients are those who had falls or car accidents as children and had 'life changing injuries' but I'm seeing them a way down the line. They would have been typically developing till their trauma but turn into children and young people with very high needs. Disability can happen to anyone, at any age.

It's one of the reasons I feel strongly we should all be more accommodating of disability in our day to day lives and in how we shape our world.

I did quite a lot and during my pregnancy.

yes I did think about it.
To be honest, I found the idea terrifying.

I have a friend with a profoundly disabled sister. His dad took a high paying job overseas in order to save enough money so that she would always have money to look after her. It destroyed their marriage, and my friend pretty much grew up without his dad.
My friend has always accpeted that once his parents died he would be responsible for his sister.
She lives in a home with 24 hour care now.

I didn't consciously think of that family when trying to conceive, but knowing them made me aware that it was a possibility.
It wasn't the caring for them, of the idea of a disbaled child. That I knew I woudl take in my stride, it was the idea that a child might need life long care and I didn't know if I could do that, and what woudl happen after I died.

Never thought it would happen to me. I feel so stupid writing that now but I’m being honest. The risk overall was tiny and I just assumed the odds were in my favour. I’d never met or spent any time with any disabled children. No knowledge of autism or other neuro diverse conditions. My son has severe and complex autism and learning disabilities. He attends a complex needs school. It’s been a huge learning curve but I love him to the moon and back and I actually think he’s made me a better person, I’m more patient and kinder. I’m also broke and exhausted but oh well!!

Yes, we’d discussed it, so when abnormalities were eventually identified at the 20 week scan and eventually DD1 was diagnosed with Edwards syndrome, we were confident in our decision to continue the pregnancy.Though we sure got an education re Edwards syndrome, I’d had no idea some individuals with it lived into adulthood for example.
DD did die aged three months from a combination of RSV, her underlying disabilities and inadequate medical care and actually with DS part of me hoped he’d have the same. I wanted to do it again. I do think now that was probably PTSD related and with DD2 I no longer wanted to go back. We were open to disabilities but were more realistic about how hard it would be with another child like DD1.

If I fell pregnant now, I’m not sure how I’d react to severe disability in my baby. Not sure with two other kids I could do it again.