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.

Its why I didn't and am now early 50s and so glad. I feel sorry for parents in that situation but I couldnt personally have knowingly written off the rest of my life to being a carer. I have a relative my age who is non verbal and completely without communication except for certain sexual and food induced urges, he is in a locked home now after both parents died. They had no life from 1973 onwards.

Between you and your husband, how many of your siblings and cousins have additional needs compared to those that don't? Try and understand the odds: it's far more likely not to happen to you than it is to happen to you.

You could also choose to invest in private screening tests which are only offered to high risk pregancies by the NHS

I disagree. I don’t know many people who would actively choose to have a child with a disability if they had a choice. (I don’t mean termination but if you could press a button to choose for your child to have a disability, I doubt that many people would choose to press it. Why would they want to make their life and their child’s life harder? I certainly wouldn’t choose to have my disabilities because they make my life harder.

I know the fear. I have one healthy child and it makes me scared to go for another, but it's a risk you take when you have a baby and as a parent I'd say the lifestyle shift is enormous, even with a healthy child. It's a tough one. I just found becoming a parent, of a much wanted and tried for child, I think I learned alot about myself and I think id be a better parent to one than roll the dice again, I have just so much admiration for parents who have children with complex needs, they pour everything into their child and if you can't do that then parenting might not be the path. Brutal as it sounds.

Your life can't be that great if an opinion from an internet stranger makes you feel shit about it.

But you also said Looking at someone's child and saying you would be devastated to have a child like that is pretty shit.. And that is absolutely not what OP said.

I think you just have to decide for yourself. Don't be guilted. My youngest has additional needs. She copes better as she grows older but it's hard. Would I swap her for the world? No. I love her. Would I have been up for a 4th child if I'd known she would have autism? Also no.

I'm a single parent and I worry every day what will become of her when I'm gone. Her siblings shouldn't have to be responsible but realistically they will end up having to be, to a degree. They love her too much to do otherwise.

But lots of people don't cope.

There are threads on here everyday from parents of severely disabled children who are utterly miserable. Who are caught between caring for their disabled child and protecting their other children. Who get beaten by their children, whose marriages are in tatters, who are dealing with violent and incontinent teenagers.

There was a post recently from a devastated mother who wanted to give her child up to social care because her younger daughter was at risk of being severely harmed by him. There was a news article recently where two disabled children were killed by their parents, who in turn committed suicide.

Saying "life will change but you'll cope" is meaningless bollocks.

You don’t know. You could not like being a mother. Many people struggle. Especially those who assume they will be great and people say will be.

You could get depression, or a child without SEN who you don’t gel with. Or like me, get a brilliant, fantastic kid with SEN who brings out the absolute best in you. It’s all luck.

I think one of the things you need to understand is that you have absolutely no control over who your children are and how they turn out - or what issues they may have to face.

They may not be ND, or they may be ND but be highly academic and not have the SEN/disability issues your cousin’s children have… but [and I am pulling from all the people I know and work with here] you could have an NT child with behavioural issues that leads her to drugs and pregnancy at 15, you could have a child that refuses school and gets involved with a gang, you could have a child that is bullied or has MH issues and commits suicide at 16/19/32 [yes, three real instances amongst work colleagues], you could have a child who is LGBor T and struggles with this, you could have a child that develops a brain tumour or Hodgkins disease and dies at 14… I could go on. None of the parents expected or knew what having a child held for them. No-one does. If you are very lucky you have a child, several children even, who have no issues and go through life without any dramas whatsoever.

Life, parenthood, is a lottery and you deal with what you are given to your best ability.

So, what I would advise is that you have some counselling for your anxiety, especially around parenting, and to really understand what it is you feel ‘being a parent’ means. What you feel it will bring to your life and what you have to offer a child. And then, if you can truly reconcile yourself to the ‘risks’ versus the incredible pleasure your children can also bring, the opportunity for yourself to grow as a person, only then do you start trying for a child.

But it is also totally fine to decide that maybe it’s not for you. My DSis has had a wonderful life and relationship with her partner precisely because she doesn’t have children. Money and freedom to explore the world together, an amazing social life and network of friends. I often envy her. So I really would suggest sitting down with DH and being really sure why/if you really want children.

Exactly. I have autism and wish everyday that I didn't. It's horrible, and on the surface I manage pretty well.

Its OK for me to say something is rude and offensive in order to give op a different viewpoint, what MN is all about.

I'm not demanding that I never get offended.

Surely most people would be devastated to have a child with profound needs? I would be devastated to have a child that could never live a normal life and in turn means my life would be turned upside down too.

OP see’s first hand how hard her cousins life is due to having a child with severe needs, she would be devastated to live that life, that’s not rude to say it’s a completely normal opinion shared by everyone on this thread!

There but for the grace of god (with a little g!) goes anyone.

When you love someone you open yourself up to the possibilities of heartbreak, deliberate or accidental.
The life you live today could change entirely tomorrow, one of you has an accident, a health event that changes the future you thought you had, they way you thought you'd look, the things you thought you'd have to do for someone.
Humans are capable of adapting though, that's how we survive. And when you become a parent, you become capable of things you'd never imagined possible, your driven to do so by deep instincts.
Who thought they could survive weeks/months/years of no sleep? Who thought they would neglect their own needs to attend to the cries of their child/husband? Who thought they could become utterly selfless in putting the needs of their school age child first and revolving whole routines around them. Who thought that 20 years later you would still not relax without knowing they were content.

We're not promised anything. It's ok not to be sure you're able, or to decide not to do something. Be realistic, but be positive about life too, in all it's beautiful variations. Different is not "less", it's often much much more.

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.

She is looking at her cousins kids and saying she would be devastated if she had them.

TBH I wouldn’t recommend you have children with this outlook (though fair play for being honest - even if offensive to some). Even if you have a ‘healthy child’ as you phrase it, there’s still every possibility they could have an accident and end up requiring round the clock care. It seems unlikely but shit happens all the time. If you can only parent a ‘healthy child’, then in my opinion (as you are asking for people’s opinions) you shouldn’t have children.

Why is it rude? It surely is devastating to find out that your child will experience significant challenges in life. There's also the long-term issues of who cares for them once you, the parents, have died. It's also a real possibility that would-be parents should keep in mind.

It’s actually a lot more than just meaningless bollocks. It’s dismissing and diminishing someone’s genuine worries and concerns because they make you feel uncomfortable. The equivalent of that most infuriating statement ‘you got this’ !!

I don't think you're being rude at all, just honest

That’s not remotely the same!

If you can't see that saying you would be devastated to live someone's life is different from saying you couldn't cope in certain situations then I don't know what to tell you.

You're saying "you can't say X, it's offensive", though.

Ultimately, it's the same thing.

This. Also there is no guarantee that a child could not develop some type of health problem, that they were not born with.

No one wants to give birth to a disabled child. That’s why since screening for Downs Syndrome was introduced you don’t see any DS children. Everyone has a termination. That’s not the same as saying people don’t want their disabled child once they have them. Lots of people have disabled children who they love and do an amazing job with. But its only honest to say it’s not a choice anyone makes.

But surely these things need talked about honestly? I would be devastated (surely most people would be? Genuinly how can you not be?)

Part of parenting is watching your children grow and develop and become independent and hopefully happy and healthy adults, so if you found out your child would never have the life you dreamed for them surely it's ok to feel devastated for them and for your future? Surely your future is undeniably different with a disabled child?

It's ok to say youd be devastated by the thought of still needing to support and care for your child long beyond what is natural.... its not a nice thing to think or talk about and it would be rude to say to someone but it's ok to admit youd be devastated to have this future for you and your family?