Scared to have children in case they have additional needs

I was ambiguous about having children, then had that decision taken away from me, and now later in life can absolutely endorse the quiet joy of being a favourite aunt rather than a parent.

OP, I understand your anxiety. My own worries about children were based on the emotional turbulence of the family I grew up in - we all had issues to resolve, resulting in endless friction. I didn't trust myself not to replicate similar disarray in my own children, such as by over-compensating. It took me half a century to establish a loving and mutually respectful relationship with my parents; I'm just lucky they lived long enough for us all to benefit.

As PPs have said, perhaps consider whether this is health anxiety and weigh up the actual estimated risks before deciding on anything.

Not sure why some PPs insist on being offended by your even exploring this question. It's no more insulting than saying "My brother is delighted that his oldest child is now a world-class tennis player, but I wouldn't want that life - his wife spent every summer ferrying them around the M25 for lessons and tournaments."

I don’t see anything wrong with your worries. Of course they would be loved and you would make it work but if you were given the choice of a NT and ND child, I’m sure most people would choose NT whether they want to admit it or not.

Having said that, out of all of the ND children I know including in the family, most of their parents have had them later on in life (late thirties and above). Maybe that’s just a coincidence.

Despite how it seems, especially on SM, most children (statistically) are born and live without difficulties. Obviously, it’s a risk, but life is a risk. 🤷‍♀️

I'm autistic, and got sterilised as soon as I could, because the idea of creating more people who'll suffer through life in the same way as me (or possibly worse!) is frankly revolting. Rolling more dice with my crap genes would be a cruel, evil thing to do.

I keep quiet about it in real-life, because people are incredibly judgey and nasty. They don't know about my struggles and how hard my life has been, though.

(Ah, it's refreshing to have been able to say that. Thank goodness for anonymous forums)

Of course. I was just highlighting the fact that it can change. Maybe having children isn’t right for OP

@Avelin
Well, all the children (my great-nieces/nephews) that my children and her cousins have, all have a degree of autism/on the spectrum, so I am guessing its hereditary on my husbands side as nothing on my sisters side. So you would be right in having a chance to have a child with disabilities

I watched this programme. It is disgraceful the lack of support, respite and residential care for these severely disabled children. The impact on siblings and parents is unrelenting. The child and the members of their family are at serious risk of injury.

I think the chances of adopting a child with SEN/disabilities is high, often their bio parents will have SEN/disabilities, and that led them to not coping as parents.
Do you want your own biological children who may have a slight risk of disabilities, but your DNA/personality, or a child with completely unfamiliar DNA/inherited personality traits/probable SEN?
Im not sure adoption is for you

It's not unreasonable to have these fears. They're fairly common. Only you can decide if pregnancy and parenthood is worth the risk - remember that pregnancy raises the risk significantly of becoming disabled yourself.

I was disabled in-utero. I've known as long as I can remember that I wasn't what my family wanted - not only did some of them not like the audacity of being a girl, but I had further audacity to not be able to be a girl properly in their eyes because of my disabilities. I'm slow in many areas, I've needed mobility aids at times while also having been a very physical child, I fumbled my way through childhood and into adulthood in many ways. I was told very young that marriage is horrible, girls like me don't marry and should be glad of it, and the last thing a girl like me should do is have kids. I was told at a young age that kids like me are just burdens.

So I married young, and have four kids. When they were little, I used a mobility scooter to go out rather than a pushchair. I'd get asked my strangers how I do it, they saw a disabled mother of young kids, but to me, we were normal. While I have disabilities from before being born and a few that were acquired along the way, they're my normal.

And yes, I have disabled kids, though one prefers to call it difficulties in large part because he doesn't view his as bad as others in the family (he's been there when we've cared for family members with terminal illnesses - his idea of normal and ill health may be a bit skewed too). I wouldn't call any of them extremely so, but others may view them differently particularly when looking at them as toddlers/very young when very physical was a good description.

Couldn't cope and being devastated are completely different things
How so?

There are plenty of things we can't cope with that don't devastate us.

I can't cope in a loud office environment. In the office I work in, I can hear pretty much any conversation had at typical volume and if there are 5-6 going on at once, I can't cope, my brain fries, I can't hear my own thoughts to work, I will go find something to do out of the office for a bit.

I'm not devastated by people talking. I'm actually glad they're enjoying themselves, it's just not something I can cope with hearing at all once.

That said, yeah, parenting a very challenging child can be devastating. I don't think that solely means disabled children, not all of which fall into being very challenging. I've supported parents who have a child in a Crown Court dock - I can only imagine how devastated I would be to be their shoes. I had a brother in a similar situation (we weren't in the UK then so not a Crown Court, but similar level of severity) and living with that was bad enough. The only thing my parents ever said about it was my mother admitting that having to leave him the first time made her weep, that it broke her heart - and I never saw my mother cry, she was a turn sadness into anger kind of person. There are multiple ways parenting can be devastating - whether that's worth the risk is something only the person going into can decide, and I don't think any of us can ever know all the factors that might break us.

I would take life with my ‘extremely autistic’ son over and over again over life without him. Yes our lives are difficult, we face big challenges, but the love he has for us, and us for him, is just bigger and more important than anything else.

Some people might not believe that we could be that happy but how could they know?!

This is what I think every time having a disabled child is mentioned on here.

There are actual mums who do care for their children on here, so it is very insensitive… even though it’s probably not meant to be.

You’re not alone op. There’s a few reasons I don’t want children, but this is certainly one of them. I love my job and career and the idea of having to give up my work to care 24/7 365 for someone for the rest of my life (I.e. if I had a child with severe disabilities) terrified me. I lift my hat to anyone who can do it, because it is so amazing and selfless, but it is not something I could do.

people on here will probably flame you and say it’s insulting, but I get where you are coming from and the fact you don’t mean offence.

it would be far worse for you to have child who is disabled and then resent them, than to never have a child.

OP, i don't think you are being insensitive , i have 3 children - i'm not going to say if they have any disabilities or not , my opinion remains the same.
You see the reality and know how hard your cousin's life is at times , your fear is perfectly reasonable.
I'm quite certain you don't go shouting your opinion out to everybody , but you are entitled to feel what you do.

@Avelin, I can completely understand these worries and fears, in fact I think it's something everyone should think about before deciding to become pregnant. I question those who are saying being a parent is not for you because you are having these thoughts and concerns. I'm a social worker, studied child psychology and am autistic myself, so it's something I am very aware of and that did cause me a lot of worry. I do not live in the UK, so something may be different but let me tell you what worked for me to help.

We did a lot of research of services available that would provide support, public and private and we delayed having a baby so that we could save money. We saved a ridiculous amount of money, but now we know we can go private for assessments, Occupational Therapy, Speech and Language Therapy, Play therapy etc. We can pay someone to look after the child, so we can have a break if needed. We also got ourselves tested for any genes we might be carrying. Again this was expensive so I understand not possible for everyone. I had frozen my eggs in my a few years previously, and that gave us more time. That's one thing I would highly recommend doing.

I would do research into things like sensory stimulation for your baby, exposing them to allergens at a young age, establishing communication skills early, baby led weaning etc. Early intervention is so important. Look at parenting programmes, some of them are amazing and you learn so many new skills and techniques around supporting regulating off emotions. Look at school's too, do your research around them.
Knowledge is power as they say and the more information you have the better prepared you are.

Talk to your husband.
It may be that children are not the right choice for you.
You cannot guarantee anything and if you feel strongly that you can only be a parent to a "healthy" child then you cannot be a parent.

My children are both disabled. It is hard. They are in their 20s now and it is still hard. It will be hard until the day I die.

The truth is that not everyone is cut out to do it and if you arent, then you shouldnt.

You know you wouldn't cope. So don't take the risk. It's that simple. Nothing wrong with acknowledging the limits of your own abilities. I was too naive to even consider the possibility that my child would have special needs. It's fortunate that he didn't. Because I would never have managed.

I agree. I think it’s reasonable to consider the implications of having a child with SEN @Avelin . I don’t think your post was insensitive or rude.I was a teacher for many years. I worked with families who coped admirably with caring for a disabled child. I also worked with families that were torn apart by caring for a disabled child. It was also invariably the mother who was left coping on her own in those cases.
I also agree with @goody2shoozregarding discussions on birth injuries.Years ago it was just a given that women had children (they had little choice in the matter).I can remember my DM commiserating with friends who found themselves pregnant multiple times. There are many different paths to a fulfilling life nowadays. I hope you and your DH can reach the right decision for you both OP.

And recognising that you couldn’t cope with disability at any stage takes that into account.

I can tell you that autism runs in my family, not all the adults are diagnosed but my child and nephew both are and no two people are affected the same. So yes, it's probably more likely that your children could be neuro-diverse if it's in the family but that doesn't mean your life would be the same as your cousin. Children are all born individual little people.

I mentioned this because a colleagues BIL, gay and aged 19, died by suicide recently. No issues with family who supported/accepted them utterly - so the point is that as a parent you have no idea what struggles your child will have and what twists their lives and MH will take.

I like your OP, @Avelin. I think it would be good if many more people stopped to ask themselves the same question before having children. It doesn’t matter how your post makes other people feel. You’re perfectly entitled to fear having a child with challenging additional needs, and to express that fear. For you, like most of us, it’s an awful prospect. If we were all given a choice during pregnancy between having a child who would be violent towards us and their siblings, struggle with ordinary everyday situations and never live an independent life, and a perfectly ordinary child, few would choose the former.

I grew up with an autistic brother. My childhood was spent walking on eggshells, hiding in the relative safety of my bedroom, waiting for the next injury to be inflicted on me and watching my mother’s helpless despair. Now in her mid seventies, my mother tells me of her endless, constant worry about her son. He meanwhile, couldn’t give a shit how any of his behaviour affects her.

So, I reiterate, you are absolutely right to question whether you are prepared to take the risk of having children. It will be such a hard decision to make. I do feel a life without children can be a truly wonderful thing, and nothing to fear. I admit that some of the happiest couples I know are the ones who don’t have children. I have three children, none of whom have additional needs, and I do often think how lucky we have been, given my brother’s condition. Conditions such as autism are in the media so much more now. I think if I had read about it being hereditary years ago, I probably wouldn’t have had my third child, as I would have considered that “pushing my luck”, so to speak. You’ll just never know one way or another. Whichever way you go, you will be taking the plunge into the unknown to a certain extent. Will you be content to live a life without children, knowing that had you chosen to have some, they may well have been perfectly healthy? No one can really help you make this huge decision. I wish you luck, OP.

It's the main reason I didn't have a third child. My heart wanted one but I was already 38 so decided the risks were too high. I know loads of people have no problems at that age but I also know I would have coped a lot less well than many people seem to.

As the kid who had severe health issues (OCD thats crippled my life and all relationships including family abandonment, depression, PTSD) I knew before i was even old enough to have a child that i could never have one, i wouldn't even cope with a healthy child, but i'd never forgive myself if i passed on the OCD thats had me suicidal multiple times and in constant mental pain all my life, to a child, i'd feel evil for burdening them with it as theres very obvious genetic causation in my family.

It’s avery real risk. Even bigger with a family history.
Yanbu- if you don’t want to take the risk then don’t have children. I say that as a parent of a child with SEND. I’m a professional in the field and I find it hard. I love my child without measure but I wouldn’t have chosen this. You are correct to be cautious- we don’t get to choose cookie cutter lives and non disabled children.

I haven’t read all the responses but I think many, many people would feel similarly to you if they really considered what life could look like with a special needs child. I don’t think it means you’re not suited to being a parent. I think the reality is that your baby will be your baby, not just a friend’s child etc. Plenty of people pre-children look at their friends with kids and think their lives look hectic and boring. And it’s kind of true. But when it’s your own child it’s different. Not that it isn’t hard but you’re pouring your love and time into a little person that belongs to you. I think this is how I imagine it would be with a special needs child. They would be your baby and life would be harder than you expected, but also probably more rewarding than you ever could have imagined. Most of us get pregnant and hope for the best. I think you are probably just thinking about this more deeply than the average person!