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.

Hi OP,

I think these are natural worries but I personally wouldn't over think it. I have four children and (as yet) no additional needs are present however I am a teacher of additional needs (ASD, Downs Syndrome as examples) and my little brother has Downs Syndrome so I do have plenty experience. My brother is the sunshine in our lives. If you worried about every eventuality in life and avoided big decisions based on what might never happen you would miss out on so much. Good luck 🍀

Even if the child doesn't have a disability you're at risk of having an extremely hard life. The majority of newborns are really difficult. Many teens will go through difficulties, and seeing your child in emotional pain that you can't fix is really heartbreaking.
If you will need to work full time doing that alongside raising children is very hard. You go from having evenings and weekends to rest and have fun to barely stopping from the moment your eyes open until it's nearly time for bed.
If you're happy with your life and don't want it to become a lot more difficult, you may be best not having a child.

Op I work on bus with autistic kids. I love it but it gave me an insight into how difficult the parents have it. Our good friends said their daughter wont have a 3rd baby for this reason.

There is a big difference between a lower number of people with DS being born, and none, like the poster I referred to, was implying.

It gets “brushed under the carpet” because so much of our politics and media downplays the realities and challenges that come with raising SEND children.
It’s not as so many on here believe, to be an easy lifestyle choice, made any easier by the mythical high finance via benefits reported so widely. There is no easy route.
The reality for far too many of us, largely women obviously, is that we forfeit careers, unable to fulfil work commitments versus the relentless admin and medical chasing . This leaves us without savings, pensions or any disposable income or personal independence. That alone is terrifying.

Holidays are inaccessible and unaffordable, friendship groups evaporate and social isolation is a very real part of our existence. This can be horrendously debilitating and avoiding depression very challenging, but we have no time or capscity for our own challenges.
Existing, even with supportive partners is all we can do, as we find ourselves in a perpetual hamster wheel, repeating the same thankless tasks/providing 24/7 care , on a diminished budget, absent of sleep, all whilst trying in vain to maintain some level of normal for our households. The little rituals such as grabbing a coffee, trios to a salon, reading for pleasure , nights out or hid forbid date nights are a sim and distant memory, never to be restored.

Despite all the above, I cannot imagine our life any other way, my love, efforts , determination & aspirations for our child is un-ending and could not be superseded by any career opportunities I now accept are all but lost. It’s a tough existence that nobody, unless in it could begin to comprehend. Nobody prepares you for this, but you just find this innate, inner strength from a magical somewhere.

I can understand why so many here find your post insensitive, it certainly rankles as it demonstrates such a lack of empathy & understanding, but many I considered to be lifelong friends also do the same. I don’t believe this because any of you are unfeeling, you just cannot “get it” from an external viewpoint.

This said, I am sure parenting children without disabilities carries other challenges, I don’t blame you for considering all possibilities, but perhaps bear some thought that you simply cannot plan or prepare for all aspects of life, you just kick into action for whatever cards life does deal to you.

I think this is slightly catastrophic thinking... For example, your DP could get in an injury and end up needing round the clock care from you in a similar way. Or anyone close to you really.

I get though that it's a risk, and it's partly why I've stuck with two babies. I didn't want to roll the dice again even though I'd love a third.

TTC is always risky - I know of some horrific pregnancy stories - but tbh life is risky. As I said, your DP could have an accident and you end up caring for him/her long term.

Also, if you have one DC and they have extra needs, you don't have to have another and add more to your plate. Personally, I'd weigh up the likelihood of your child having a disability and then make a call based on what you think you could handle. It all likelihood you would end up with a healthy, typical baby.

I don’t suppose anyone goes into parenthood hoping their child will be ill/disabled.

if it happens it happens, you find a way to deal with it, regardless of illness/disability if you were trying to have a baby they are still wanted.

i think Jesy was very honest that she found her babies diagnosis hard because she wanted to be their mum not their nurse. I know that struggle must be hard to have what you imagined be so very different.

have you thought about fostering/adoption as an alternative.

You're stronger than you think for realising this would be a problem for you.
I originally never wanted children for this reason (and many others).
With my DD is didnt find out I was pregnant until quite far through my pregnancy, so we kept her, and it plagued my pregnancy and was a contributing factor in my severe post partum depression.

She's now 3, and contraception is doubled 🤣🤣 no more accidentals here, I know i can't cope with 2 and I know I wouldn't cope with any additional needs.
Those that do are absolutely fantastic, but I know my own limitations.

Even if you had healthy children, there’s a possibility they could become ill or disabled at a later stage.

Because of some of the jobs I’ve had, I have a lot of experience of working with families where there are children and adults with disabilities and long term chronic illness.

I have huge respect, empathy and admiration for how some of these families cope day to day. Fighting, advocating, fiercely loving and just keeping going.

I think my view may be skewed because I see those really struggling but it has made me question what I am capable of and whether I have the personality and resilience to do what they do. I really don’t think I do.

There’s a lot of neurodiversity in my family and another genetic condition that relations have which adds to the worry.

I can see why this thread could be very upsetting for those parents with their own children with disabilities and I’m sorry for that.
But I do think it’s time we had more honest conversations about the challenges of parenting and really examining if this is something we feel able to do.

I think the Welcome to Holland poem is patronising. There is a Welcome to Beirut which I think is the reality of many people's experiences and closer to mine.

I understand where you are coming from OP. I had an extremely disabled sister and saw the toll it took on my parents. For a long time
I vowed never to have kids as I just wouldn’t be able to handle it if they had needs like that. My DH really wanted one so we went for it - we had a perfectly healthy (now 8 yo!) DD. If you want children it is a risk you have to take, I took it and am so glad I did. What I will say is, had they had 20 week scans when my brother was born, his disabilities would have been noticed. I will also say that of all the people I know who have kids only one is ND with additional needs, it is hard on them, but I think as we hear so much about it now it can sound extremely common even though the majority of children are NT/healthy.

I agree with this. That's not to say people don't cope or enjoy their life or whatever but I think it's fine to say you would be devastated, as long as you act on that and don't have a child.
We have two children, both have ASD. Our neighbours are childless and whilst they are great with our kids they very clearly look on at our lives in abject horror! That's ok. Sometimes it is shit. Sometimes it's great. They don't know what it's like living our life.

We all rolled the dice when we decided to have each child.

This is a really interesting post! I have 4 children, the youngest of which has a very severe disability and will require round the clock care for the rest of her life. When I met my husband he always said he could never cope with a disabled child and here he is in a position where he has no choice (he either has to cope or walk away!). I love my youngest daughter just the same as all my other children and wouldn’t change her for the world. What I do wish for her is that her life could be easier and she could have the same opportunities as others her age and speak/communicate her needs and wants and walk/run and not have so many health worries. But what I will add is that when she laughs it’s the most amazing feeling in the world as is every little tiny milestone, I’ve also met the most wonderful people through this journey that I wouldn’t have done otherwise and have found a strength in myself I didn’t know I had.
No one knows what life has planned for them but I would say if you want children to try to put your fears aside, chances are everything will be fine and if along the way things crop up that you’re not expecting you’ll cope.
And also just to add I didn’t find your post remotely insensitive, I think it’s great that you’re acknowledging your worries. X

@FruitSaladYummyYummyFruitSaladYummyYummy my friend's life IS devastated. However much she loves her dc with multiple complex needs including non verbal autism etc (and she loves him fully and unconditionally, of course) her life has been devastated,

She has PTSD. (properly diagnosed) . She has had a broken orbital fracture and numerous black eyes and had to get protective clothing - I think kick boxing kit or similar to protect herself. Her career has gone, her younger children were put on some sort of child protection register because they were at risk physically and emotionally, and one lost years of schooling due to disruption. Her marriage failed (this is common - lots of men really can't cope, or the stress exposes differences in feelings etc) . She has had no social life or holidays (except visits for a coffee from friends like me). She deals with faeces everywhere. Or did until her Dc was finally, after years of struggle, granted residential care in a suitable home.

Am I supposed to say to her 'Well your life may have devastated you but it wouldn't devastate me'? That would be pretty damn insulting!

She loves her Dc. I am as fond of her Dc as I am of any other friend's Dc. But she would be the first to say her life is devastated - and you are saying she shouldn't say that? Or that I shouldn't acknowledge that?

Hah! For all I know the OP could be talking about my friend.

This is a big factor in why I don't want children. There is autism and ADHD on both sides of my family. I've seen the struggle and associated mental health problems and experienced it myself and I wouldn't want my child to have to go through it. My own mental health isn't good enough to support a child with similar issues.

I have a friend with a disabled child and she’s open about how awful it is and if she has a choice she would take away her child’s disability. She’s even admitted if she knew this is how her life would be then would she have chosen to have her daughter who knows. Buts it’s bloody brave to be so open and speak her truth.

I don’t think wanting a healthy child makes you a monster. Yes there’s is a small percentage chance and every parent rolls that dice. I think being around children with additional needs really high lights the situation and how difficult it can be.

Autism can have a genetic link so normally one of the parents might be but undiagnosed. Op you never know what life has planned, you could potentially have a death or a disability. I think the bigger question is what would be your biggest regret? Never trying for kids out of fear or having a disabled child?

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!

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.

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 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.

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.

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 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.

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