Worries about having a child with disabilities

[worrywilma]

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.

Is this a worry that ever crosses your mind whilst TTC?

I really don't mean to offend anyone, and I know that people love their children unconditionally, despite difficulties etc.

You're missing the point, 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. You are indeed correct that those who know that they don't want that life regardless of how unlikely it is shouldn't have children, hence why it's important to really think about this when deciding whether to have children or not. OP is being entirely sensible, I wish everyone would realise the enormity of being a parent and put consideration into whether parenting as a whole is for them or not.

How would adoption be any better? I mean the child could still develop a disability later on in life

Well I have 2 autistic kids and one with ADHD and I would absolutely definitely have exactly these same kids again, and no it hasn't always been easy, but it certainly hasn't been a life filled with stress, worry and fear. Maybe because I have a strong view that kids are who they are.

My kid got an ehcp easily though it wasn't much help when he started to get too anxious to attend school. We just thought he needed to hunker down and feel better though, we never pushed for services or residential or anything at that point. Maybe our lack of pushing is why we never especially resented the limited services he received. We felt that time and low demands were the only things that were going to help.

I occasionally look wistfully at NT families and think it would be nice if my now teen and adult kids hugged each other or had a siblings WhatsApp. They very much move in their own individual orbits with me and DH at the centre of each individual's orbit, but they aren't really in each others'. But I love the banter, the puns, the pedantry, the recitation of facts etc that we get instead. And yes, you love your kids unconditionally.

https://sparkforautism.org/discover_article/autism-and-prematurity/

@Everythingzrosie I appreciate your comments and welcome views from both sides of the coin, but I have to point out a massive flaw in what you're saying.

Yes we can share opinions on if we would cope with a disabled child. Yes we can fear it.

What we shouldn’t be doing is discarding disabled children like their lives aren’t worthy of being here because they are ND.

No one on this thread has said anything remotely like this.

Maybe my choice of words wasn't correct in my first post regarding autism. I should've been clearer that I am referring to profoundly disabled children due to genetic conditions that they're born with. I don't believe for a second that the parents of those children wouldn't give anything to take away the pain and suffering that their children are going through.

Of course they love them for who they are on this earth and bring lots of joy to them.

@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.

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

@moosey89 that's what's going on with me now. We ttc for around 8 months with tracking etc then another 6 months of just relaxing and it hasn't happened.

In all that time I've had chance to think about the what ifs, and maybe there's a reason it hasn't happened?

Good luck on your journey and I hope you get your BFP soon!

Thank you @Naptrappedmummy

You've put it much more eloquently than I could have.

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 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.

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

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

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.

@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.

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.

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 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 was clumsy with my wording @greyflannel
Apologies

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.

@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.

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.

@cestlavielife exactly.

@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.

@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.