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.

Then don’t have children. I am autistic, low support needs as an adult, I was a pretty difficult child but that was due to lack of proper support, especially during school. DH has ADHD and was a very difficult child (by his own admission and also from what MIL says). We knew one of our kids would probably have some level of additional needs. DD1 seems neurotypical, DS has suspected autism. He presented very similar to me as a child but now he has support he’s much easier, once he gets a formal diagnosis and we can get him some more support at school I think he will lead a relatively “normal” life. DD2 is too young to know but she’s hitting all her mile stones. She is our last one, we would probably have had another but with DS being autistic we decided to stop at three.

Any one of them could also become physically disabled at any point. God forbid that happen but it’s possible.

I think it's okay to say you'd be devastated if your child was disabled. Nobody wants their child to struggle and suffer, do they?

YANBU.
I have an autistic child and if I'm bluntly honest, if I had my time again I would not have a child.
People say there is not more autism than there used to be but I disagree - there is definitely something in the modern world causing it to be more prolific, so the chances of having an autistic child are getting higher. There is also a higher chance if you or your husband have any neurodiversity. It was only after my daughter was diagnosed that my husband and I realised we both have autistic traits.

I would talk to your husband. Maybe he feels the same as you.

I understand this, but part of being a mother is supporting and loving your children no matter what – they could have SEND, develop a serious illness, become disabled later in life. If you already know that you couldn’t accept that, I wouldn’t roll the dice.

Maybe adopt?

I too worried and got very bad anxiety after birth. I had none of these thoughts before

I don’t think you’re wrong to feel this way. It’s like a lot of children of alcoholics grow up tee total because they’ve seen the impact it has and never want to experience that.

It wasn’t something I considered when TTC but I haven’t had much exposure to children with significant needs like you have. You just presume everything will be perfect but you’ve see it’s not always that way and no one would want that life for themselves or their child, it’s not what you dream of when planing a family and I don’t think it’s wrong to acknowledge that.

The other side is that even if you had healthy children on birth - they could always have a life alternating accident at any point, cancer, all sorts.

If you aren't prepared for that risk then it's probably best you don't have children

Are you willing to share how severe the special needs are & what it entails for your cousin. This knowledge would influence my thoughts before answering with an opinion.

Adopted children are likely to have additional needs from trauma

Ops looking at her cousins very real situation and saying that she would be devastated to have her kids.

Saying you don't think you could cope in someone's situation is fine, realistic, and to be admired. Saying you would be devastated to live the reality of many of us is very different.

I agree with this

I think it's sensible to be aware of it but I think that you can cope with more than you think, and when in that situation you just get on with it.
2 of my dc have some additional needs (asd) and parenting them can sometimes be a challenge but they function well in every day life and I get a lot of joy from being their mum.
Potentially I might not have had 3 kids had I known, or had I thought about how demanding the older years would be.

But I think to have one is ok, one with additional needs I believe you would be able to cope with.

YANBU of course as you are entiled to feel how you feel.

Funny thing is, when DH and I were planning a family back in the 1990s, this 'worry' never even entered our head. It wasn't even on our radar. In fact, I don't think it was on many peoples radar at all. But in the 2020s it is. I wonder why.....

she is allowed to express her own personal opinion and fears. You choose to take it personally.

It’s not rude. She is being realistic and thinking ahead. It’s not a good idea to have children knowing that there’s a possibility you could have a child with additional needs and that you know you could not cope with it.

OP, I agree with you. I did actually have one child (without even considering the possibly of additional needs beforehand- I’m not sure I would have had any children if I had considered it). A year after I had my daughter, my BIL had a child with severe autism. She was diagnosed very, very young. Seeing how hard their life is put me off having a second because I did not want to live a life as hard as they have it. I feel very sorry for them, their child will never leave home or work etc. Parenting for them in the daily caring sense will never end.

No one can tell you what to do, only you know what you are prepared to deal with.

YANBU-but wonder whether you suffer from an anxiety disorder such as health anxiety or OCD? I know a lot of people with children and strangely have never met anyone who has children with very severe disabilities. Most children don’t. There is no way of knowing how your future children will turn out. It’s unlikely that they’ll have disabilities to the extend of your cousin’s children.

@AvelinI’m the single parent of multiple children with needs - medical and neurodiversity. I’m not in the smallest bit offended by you expressing an honest view on how you’d feel to be living my life. Younger me would be devastated imagining my life as it is now. Current me finds it incredibly difficult and if I’d really thought about it, I may never have chosen to have children, much as I adore them. So I think you are sensible and thoughtful to consider it seriously.

My children's father is also autistic and I didn't pick up on it (it's obvious looking back)

So think carefully about your dp/dh and whether they have any autistic traits. If so: they may function well and lead a happy life but the chances of having an autistic child are high, and it could present very differently.

"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."

It's fine for people to feel devastation about their own lives or think they would be devastated in a certain situation.

It's wrong to make assumptions about how other people feel about their own situations ( although I don't think that is what the OP meant).

How do you feel about the millions of disabled parents out there who are mentally destroyed by raising their children - or who go onto harm their children and themselves because they can't cope with the day to day reality?

I think it's perfectly okay to say "X would devastate me so it's not a risk I would ever take".

Only thing I would say is my daughter has some medical needs and I wouldn’t have said I felt confident about managing a child with these before I had her. My daughter (first child) was also unplanned and I didn’t feel confident about motherhood full stop and felt quite terrified and incredulous that the hospital let me leave to look after this tiny precious thing that I felt very unsure I could look after even after reading books etc. She was a high needs baby and the first months were an intense blur that we somehow came out of the other side of (although medical needs continued). I had some support. She is absolutely amazing and now thriving in school, y5. My skills and confidence grew as we went along. I am so glad I am her mum.
its worth talking it through with your dh, it sounds like he is good with kids and you could be a team. Your experience may not be the same as your cousins. Challenging in other ways maybe as I think parenting always is brutal in some ways even without disabilities, esp the early years but it’s amazing as well. You could find yourself knackered, wearing a three day old t shirt, house a tip, gazing adoringly at a pic of your kid eating a piece of cheese or something and thinking life is amazing. Just to put the other point of view 😀

My older brother, born perfectly healthy in the 80s, got an illness when he was a few weeks old that left him profoundly disabled. My parents were told he wouldn't live to see his first birthday but he made it to his early teens. Growing up as a glass child was difficult and did play on my mind when I came to have my own family. That's not to say my brother wasn't loved dearly. He was loved and cared for and is sorely missed. But all our lives would have been different if he hadn't been disabled.

My desire to be a mother was too strong and despite fertility struggles, I've managed to have two wonderful children who I wouldn't be without.

The illness my brother had could have been picked up from bacteria in incorrectly prepared formula. I have exclusively breastfed both of my children due to this, and because I suffered horribly from ENT infections as a child and wanted to do everything I could to stop my children suffering like I did.

As I'm now older I have decided to stop at two as the risks have increased with age. A family member has a physically disabled child who requires a wheelchair and it does make life less straightforward.

I am the single parent of a child who became disabled at the age of 10, my 2 younger children are also autistic. I am fully aware how difficult it is.

It's fine to say you couldn't cope, it's not fine to say you would be devastated to have kids like mine.

If the OP feels she cant risk having a child with additional needs adopting is NOT the way to go. Most adopted children will have extra needs, emotionally etc. Many are later diagnosed with FASD and you have no way of knowing the genetic history and chances of any hereditary conditions.

OP I do think it is sonething to consider, but the odds are still small and am guessing you drive a car, go on planes live your daily life.

The reality is that any of us could become disabled at any point we just dont like to think about it.

I have 6 children. One has complex needs, 4 others autistic/adhd but lower level support needs generally.. I didnt know about the older childrens autism and newds until after I had had my younger ones who have higher support needs. I still would have had them but it IS hard. I am not devastated though. I am sad at how hard life is for them and dealing with the systems to get education, support etc is breaking me.

I think its ok to consider these things but we do need to be thoughtful in how we voice that.

I dont know what the answer is OP, talk to your partner. Look at genetic history of your family. Only you can know how much you want a family. But having children isnt for everyone and thats a valid choice to make

I have a son with additional needs, it was HARD when he was younger, he didn't speak, we had multiple appointments, he is now pretty much a typical teenager, he does have his difficulties. I ended up having a termination a few years ago after finding out I was pregnant, for the main reason it's likely to be a child with additional needs and I would be devastated if I had a child with significant needs who would impact both my children. I've been lucky to have a child who does have needs to not be hugely significant.