Scared to have children in case they have additional needs

[Avelin]

A cousin of mine has two extremely autistic children. I love her kids deeply but I would be absolutely devastated if I had to live her life. One of her kids is non verbal and they are both very physical and can cause harm (intentionally and unintentionally. My sister and I try to give this cousin a break whenever possible (maybe once a month?) but we are so exhausted after even one evening.

I know the risk of having a child with additional needs is low but I’m absolutely terrified this could end up being my life. I love children, I love seeing how they interpret the world. I love doing arts and crafts/baking with my nieces and nephews. And many people think I’d make a good mum. But I’m just so scared of the possibility that any future children would have problems. Even though im very healthy and so is dh.

Is this normal? I’m 31 and dh is 35. 2026 was supposed to be the year we started trying for a baby. But I’m extremely anxious.

It’s sad there have just been so many people dealt lousy cards e.g. Jesy from Little Mix and her twin daughters.

I know some will say “well it sounds like you’re too selfish and immature to have a child”. I don’t believe that to be the case. I’m just aware of my limits and having a life that is not extremely hard is a priority for me.

I think this is amazing that you're admitting it to yourself that you don't want this possibility.

I wonder if those on this thread making the OP feel bad for her honesty would have chosen a life with children with additional needs? As all the parents I know with children with additional needs love their children deeply, but would have preferred to not live the life they're living.

When I had my children, I didn't need to think about them having SEN too hard, as there are so many more children now with SEN then there were 25 years ago.

I think only you can decide if it's worth rolling the dice OP. I think people cope with far more than they think they can when they're in the situation.

OP do ignore those trying to castigate you. It’s your life and each of us have different views of what is and isn’t intolerable. I personally have known people who were devastated to have a child with severe additional needs. There are people whose lives are devastated by this. They shouldn’t be forbidden to speak this, and I have heard people living this be really angry at those who try to stop them speaking of how they experience their life. So given that some people are devastated, it’s perfectly rationale for you to forecast that you would be too, and it’s perfectly reasonable for you to want to talk about the dilemma this puts you in on an anonymous site.

Well that’s the gamble isn’t it. Everyone wants healthy children with no additional needs but sometimes that’s not the hand we are dealt. Even children who start off typical can have accidents/life-changing illnesses. We never know what’s going to happen. Sounds like perhaps it isn’t worth rolling the dice for you. That’s fine, it’s a valid choice.

Well, there’s your answer. Start looking at adoption.

If you feel you could not raise a child with additional needs you should not adopt. My DC are both autistic, I love being their Mum and it is very worth it for me as hard as some days are. I think realistically, you have very set expectations of what being a parent looks like. Even healthy NT DC are a roll of the dice, if you're not willing to be open minded it probably isn't for you.

Yanbu OP

There are posts every day on here from parents with children with significant additional needs, saying they love their kids but they hate their lives, they can't cope, it's ruined their relationships, their other children are at risk from harm etc. Lots of people in this situation (and lots of people who have kids without additional needs) regret having kids. However others don't.

Ita a gamble. All you can do is arm yourself with knowledge, look at the risks / chances, which are likely low if you don't have a family history. And then make a choice if the risks are worth it after discussing with your partner how you would approach it (eg if you had a child that couldn't go to regular childcare)

If that's how you feel you'll have to accept not having children because no-one can guarantee you won't have a child with additional needs
I guess you could consider adoption. My cousin went down this route (for different reasons) but they were clear they couldn't cope with a child with additional needs. They adopted a 2 year old with no additional needs (but it's a long difficult process). Other than that I'm not sure what else you can do.

Fair play OP. I actually wish more people really thought about having kids . Most people just have them with little consideration to cost, personal circumstances and the enormous consequences of some SEN.
I have huge respect for parents in SEN families. Their lives are taking a very different road, Their kids may never leave home and will always need them.
Good luck OP in whatever you decide is best for you.

It's commendable of the op to think of all the what ifs and decide that she couldn't cope and make her decisions based off that.

It is offensive to look at someone's child and say you would be devastated if you had to raise them, or one like them though.

I’ve suffered from infertility for years while my BILs and SILs have had children who are now aged 4-12. 5 children in total - all have a diagnosis of either autism, ADHD or both. And with it being genetic and running in families I’m weirdly quite relieved we haven’t managed to conceive.

I hate this argument. Sometimes people don’t cope. Sometimes it truly breaks them. I was not coping with being a carer to my Grandmother with dementia and end stage COPD. I continued to do it but I was honestly going mad. I wound up with a phobia of sleep. I got PTSD from a mixture of that and caring for another family member. There was no coping. I broke a little more each day.

A friend who had an extremely violent and severely disabled child ended up in a psychiatric hospital more than once because of her situation. She was not coping and that was no reflection on her, her abilities, efforts and the love she had for her children. That situation would have broken anyone.

And yes these are worst case scenarios. Most situations with a child with additional needs are not so extreme but they can be and no, people do not always cope. No matter how hard they try.

I think don't have children while you're feeling like this. The day may come when you have such a strong drive to procreate that you go ahead wiling to deal with whatever happens.

I don’t think your selfish OP, I think you’re brave and realistic. I have two healthy apparently neurotypical children. I also have similar levels of disability in my family and when I unexpectedly became pregnant last year this was something I definitely considered. I felt I have to carefully consider the risk and what I could cope with and how all outcomes would affect my existing children. Something that really helped me was I put all of my and DH family history into ChatGPT and asked what my risk of certain conditions was. My autism risk came back at about 7% which is obviously a 93% chance of not, when you consider this it is a small risk. Obviously I’m not sure how accurate this is and I wouldn’t advise making such huge life changing decisions based solely on what ChatGPT says but it did help me think rationally and not get ahead of myself. Also within that 7% there is of course a huge spectrum of how affected a child may be.

Lots don’t cope. Or they ‘cope’ but are very unhappy, depressed, exhausted, anxious and are just surviving.

I don't think it is.

I would be devastated to have a dog or cat. I would find it really hard and it would ruin my life. I'm not being offensive to cat or dog owners. I'm not telling them that they should be devastated. I often see posters on child free threads writing that they would be devastated if they fell pregnant. I don't find this offensive as someone with a child. We need to stop projecting.

They are really valid concerns.
When my mum was pregnant with me she saw someone w Down syndrome and said she cried as she was scared I would have it (this was early 1970s when the term was ‘mong*l’. She had me quite late in life hence the worry.
i had two DC in early my 30s - 20+ years ago. They both had minor health issues at birth and one of my reasons not to have a third was not risking having a child with additional needs. I wouldn’t have coped. As it is they’ve struggled w their mental health, so it’s not been plain sailing, but it’s not the same as having a disability from birth.

It is just life. What would you do then if you had kids and they were high end needs kids??

The lives of my friends with children with high additional needs are very hard. Surely we can admit that.

OP isn’t talking just from observation; she actually tries to help out her friend.

When my child missed milestones I found it very upsetting and worried a lot. I don’t think it’s offensive that others wouldn’t want that to be their experience. I didn’t want it to be our experience.

I think lots of people just assume their child will be fine so it’s good you’ve thought about it. You just have to accept there’s a risk if you have a child. Even if your child is healthy they could later have an accident and require care. It’s the responsibility you accept being a parent.

@Avelin something else that you may want to consider is the risk to yourself of birth injuries. Another complete unknown - until you have given birth. And something that is not talked about enough.

The thing is, everyone is ‘devastated ‘ in different degrees by not having what what they expect and very few get the ideal. You could have perfectly NT children who meet the wrong people and that happy ten year old is an angry, drug taking adict at 18. You could have a lovely, healthy child who has a devastating accident or life changing illness. No one knows whether they can cope with it - your cousin didn’t but she does because she has to. There is no choice. I thought I would have girls who loved books and would read like me and be perfectly biddable. I had two boys, one with multiple dfferences, the other who became diabetic aged 8. Neither of them read! They are, however, biddable and utterly lovely kind and gentle souls. Life was hard with DS1 mainly due to him not fitting into school very well and the system being a battle. Did I cope - yes. Was it hard - yes. Am I now hypervigilant all the time - yes but he is happy, works full time, has his own place and with our help lives independently. He is an utterly wonderful person. The thing you are not factoring in is love. I’m no mush bucket but the fierce, intense love you have gets you through. Statstically your child will be ‘fine’ but then again, who knows. I know where you are coming from. I was petrified number 2 would have significant needs but you can’t live your life on a what if. I must admit the diabetes was a walk in the park compared to autism (very verbal though) but your child will likely be NT and if not, for whatever reason, then you will cope because you will love them.

I don't think you are selfish. Selfish is having multiple children with little thought to their material quality of life.

Having said that, nothing is guaranteed OP. A friend's 4 year old suffered a non-fatal drowning and is now profoundly disabled.

I love my DC with every fibre of my being, but if I were 25 today, I would choose not to have children. For other reasons than disability though.

Neurodivergence is genetic.

If you really think about the adults in your family, are the traits there (ie did this come from your cousin’s side) and do the same with her husband? If the traits are in your own family (or your husband’s) the risks are so much more significant. It is unlikely that two neurotypical people from neurotypical families will have children who are neurodiverse. Note that a huge proportion of neurodiverse people in our generation will be undiagnosed.

However - neurodiversity aside, there are many other things which could lead to a child potentially needing more care or being disabled. Birth issues, an accident, other non genetic conditions that you can’t screen for…

Having a child will always involve rolling a dice.

I would have liked another child, however between child 2 and having potential child 3, I learned (through our real life) that there’s lots of neurodiversity in our family and that it was very likely a third would be neurodiverse too. My main concern was similar to yours - I know I would not cope with a severely autistic child, and I knew that because of the family genetics that I was previously unaware of, the odds would not be stacked in my favour. We decided against trying for a third child, and I know that was the right decision.

If I knew you irl and said "I would absolutely love to have kids, but I would be devastated if I had one that turned out like yours" I'm pretty sure you would take offence.

Your children may not have additional need, like a lot of children don't, and how lovely for everyone that would be, and I was going to suggest adoption if that were your main concern, but then you said "healthy".

Unfortunately things can still happen, terrible debilitating accidents requiring lifelong care, serious illnesses resulting in disability, or worse. Having an autistic child is most certainly not the end of the world when you consider all of the other things that can, and sadly do, happen, and if that risk is too much for you to cope with then maybe having children isn't for you.