Worries about having a child with disabilities

here it is, hope it works

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10146734/#:~:text=High%20maternal%20vitamin%20B12%20levels,2.41%20(p%20%3D%200.026).

Do you have a link to the article please?

I read an article that high levels of B12 in women increase chances of offspring having autism. I thought that was interesting when I was trying to TTC. I’ve worked with children who have autism and we saw a spike in increase over the years and I always wondered why, perhaps things like that had an effect.

It's okay to be scared of it, but if you aren't prepared to have a child regardless of any condition then I'd maybe reconsider ttc.

Disability comes in so many forms and at any time. My sons didn't show up until he was 4 and it may never leave him. He's 9 now.

I'm autistic and adhd and I genuinely mean what I've said. Children know when you resent them etc. Just don't do it.

there is no history in DH’s or in my family of any special needs. None.
our first son was born with developmental delays. I never ever expected to have a child with special needs. He is 18 now.

I can tell you it has been extremely hard. For over a decade I thought I was going to die through sheer lack of sleep and tiredness.

I can also tell you that we love him to bits and he has such a lovely soul.

you could end up having a child with no learning disabilities and perfect chromosomes but a nasty psychopath!

you could end up with a perfect child who develops severe mental health problems later in life.

there are no guarantees.

in short, if you are not willing to accept whoever comes to you, just please don’t have children

@Naptrappedmummy why is it ridiculous to point out the obvious? If the fear is that profound, then you’d rent not buy. Don’t get married, just live together. Easier to get out of both of those things. Same as giving birth to a child who is ND. You can’t just walk away from that as easily as if you don’t give birth at all and get a pet? It’s the easier option. Op has voiced her fear. That’s fine. She’s an outsider looking in on other families with children who are autistic. She’s fearing an unknown and basing TTC and autism. It’s naive to think that’s the only specific thing to be worrying about based on looking through a window.

@worrywilma also I hate to break it to you but ‘ so full of stress, worry and fear.’ That’s exactly what parenting brings, disability or not.

@cestlavielife exactly.

some people don't want to risk being a full time carer for the rest of their life regardless of whether this is through a disability at birth or one that occurs later in a child's life

Indeed, in that case dont risk it. Dont have a child. It is not compulsory. Maybe get a dog.

@worrywilma well if you are calling massive flaws

‘I'm fully prepared to get my arse handed to me on this thread, but I need to know if this is a common place worry or not. If not then I obviously have to reconsider TTC at all.

I have major worries over having a child with a disability, specifically autism.

I don't have any family members with autism but a couple of my friend's children are on the spectrum, some quite severe, and their lives are so full of stress, worry and fear. They all said if they could turn back the clock, they wouldn't have had children.

Being a mum is the only thing I ever wanted to do, and thought I might be any good at, but seeing my friends, and reading stories on here about teenagers who smear, sever mental health issues and the lack of support available to families with children who have disabilities, absolutely terrifies me.’

you said specifically autism. You said on the spectrum.
so you noticed you’ve offended me, you said you were prepared to get your arse kicked, yet seem to not want to hear it?

Yes I stand by what I’ve said. Don’t become a parent if you aren’t prepared to care for a child who is autistic, who would smear etc. if you that sure it’s too much for you, don’t risk it. It makes perfect sense.

I’m so sorry. Sometimes there is just no dressing it up. If it helps my experience from my DSS is that if you throw your hands up and say you can’t cope they’ll need to go into care, the wheels start to turn.

I was clumsy with my wording @greyflannel
Apologies

I think it is normal to worry about the "what ifs" - I'm pregnant currently and have another child and I have had this thought with both of them.

Of course, once our children are born, we love them unconditionally and would always do what we can to help them. However it is natural to be concerned about how we would cope if there was a challenge due to disability etc.

I don't think it means you're not cut out to be a parent!

I have a perfectly healthy child.

He happends to have autism as well as other neurodevelopmental conditions, and also a lifelong unrelated medical condition that meets the legal definition of 'disablity', but he is perfectly healthy.

BTW: Lots of people have children who meet the definition of disability - it's really common (11%). By definition all will face significant disadvantages on a daily basis, but the spectrum of that experience and the impact on child and family is vast. Best wishes and respect to @Thehonestbadger.

I think it’s a perfectly valid and sensible worry to have.

I know it did worry me, but my urge/overwhelming broodiness took over.
The risks are very small, so the most likely result will be that you will have a perfectly healthy baby. I have anxiety about many things, so have to regularly remind myself of that.

@worrywilma I don't think I have spoken to any pregnant mothers to be who don't worry if their child might have something of a disability , I certainly did but truth is most don't.
I think the best thing would be to get this into proportion and then decide if you are prepared to go ahead in case there is something.

It is certainly something I've thought about (well, my husband is high functioning ASD) but never massively worried about. I now have a 2 year old who is very advanced for his age. He talks non-stop, he's very bright, sociable with everyone he meets. There are no traits of autism, so far. A world away from his dad at this age apparently (he had delayed speech). So even with our high odds, it's obviously not guaranteed.

It didn’t cross my mind and now I have a severely autistic non verbal almost 4yo and have just endured the worst 1-2 years of my life. I feel like my future has been stolen and my entire life revolves around his care and fighting every single authority relentlessly just to get him the basics.

I’ve lost my career, social life, friends and hobbies. I’ve lost everything and honestly if I could go back I’d not have him, without a doubt

sorry, that should have read 'face elevated risks of victimisation'.

I think you may misunderstand the nature of ASD or how common the experience of 'normal life being impossible' actually is. This does not mean other ways of living aren't possible, but the whole point of the social model of disability is how appalling people who cannot behave normatively are treated in society and how excluded they are from many realms of life, plus the profound costs individuals and their families pay for this lack of 'fit' in the social world and the accompanying discrimination (including the prevalence of distressed behaviours).

People make poorly informed assumptions about 'mildness' and 'severity'. For example:

Only 30% of ALL autistic people work.
Only 10% of ALL autistic people work full time.
ALL autistic people are elevated risks of victimisation.
Autistic people on average have a life expectancy reduced by 10 years. And their carers by 8 years.
Parents of autistic children experience more distress and have greater feelings of stigma than parents of children with other types of disabilities.

None of this feels especially 'mild'...which isn't to suggest that those families with children with profound learning disabilities and autism don't face much greater challenges.

I am autistic which is why I have chosen not to have kids. I couldn't cope with a kid who was like I was as a child. Absolute nightmare.

I think an awful lot of posters on here are being quite disingenuous by deliberately conflating the sort of disabilities the OP has stayed with milder conditions/ASD. And also by making out she just doesn’t want a perfect child rather than it’s because she’s worried about having a child with such profound issues that normal life is essentially impossible. Also all this ‘don’t have children if you couldn’t cope with severe disability’ is ridiculous - what other decisions in life do you make based on quite remote unlikelihoods? Don’t buy a house in case you lose your job and can’t pay the mortgage? Don’t get married in case you end up divorced? Etc

@worrywilma when I first started TTC it didn't even cross my mind that I might have a child with a disability. There was this naïve assumption that I'd get pregnant easily, have a baby (then a second a couple of years later) and we'd play happy families just like the nuclear families of 1990s TV shows.

I've been TTC now for years with multiple losses, and the longer I've been trying, the more time I've had for worries to creep in. I worry about coping with a disabled child should that happen, I worry about not enjoying being a parent and going through years of upset and stress and hating it
and then combining the 2 would be so so hard (in my opinion).

I think it is natural and actually sensible to have worries and to talk them through with your partner, not just about disabilities but about finances, childcare, lifestyle changes that are required when you have kids etc. Me and my partner have agreed we want to continue TTC knowing the risks and knowing the heartache we could have more of given our experience.