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.

Why those dates. What about those detained right now? Less than before but still current.

Because there’s a massive gap between the end of the institutions and what some people believe is a huge rise in certain types of disability

My son has ASD and likely ADHD - he's 5. We made the decision not to have more kids because we cannot cope as it is. Love my DS dearly but it's gruelling, lonely and relentless. He's in mainstream school and copes fine for now but at home I'm subjected to alot of violence from him which I am powerless to stop. We had a diagnosis at 3 and weekly support ever since. He looks like any other kid but noone has any idea what goes on at home. I feel like the stigma around SEN kids is far worse now, and because he "looks fine people assume he's just badly behaved. We aren't able to do the simple things other people do like shopping, going to a cafe, learning to swim. It's hard.

Even life with children without additional needs is hard. It’s not all just baking I’m afraid.

If you really want kids, you must accept the reality that no kid is perfect, and you’ll have to keep going no matter what hand you’re dealt with. Same with everything else in life.

Just wanted to offer an alternative viewpoint, as many of the posts on this thread are from parents of disabled children but I can't see any comments from disabled adults who were born disabled sharing their stories.
I was born with severe physical disabilities, born without eyes and with multiple joint deformities.
My parents did everything in their power to ensure I had the best childhood possible, pulling out all the stops to make certain I had access to a good and accessible education and also that I was able to enjoy the experiences and opportunities other children enjoyed.
I am not saying it was easy for them but I had a very happy and stimulating childhood and never felt I missed out on much that my non-disabled peers had. I remember having many joyous family times with my family, most of my childhood memories are very positive ones, I can assure everyone that it was not a relentless miserable slog for all involved! I know my parents loved being my mum and dad too and that they did not spend all the time wishing I had been born 'normal'.
Thanks to my wonderful parents and their determination to give me the best life possible, I did very well academically at school. I received a first class degree from a top university and now have a fulfilling career which I love. Most importantly, I am very happily married and have a perfect baby girl of my own.
I am still severely disabled and do require a great deal of specialist equipment, adaptive technology and support from carers to help me with daily tasks, but I have a fantastic, extremely happy life and would not change a thing.
Just wanted to offer the perspective that life for children born disabled is not automatically going to be grim and tragic and can, on the contrary, be every bit as good as life with non-disabled children. Disabled children are not some kind of booby prize.

Having children is very much a roll of the dice- in every single aspect. You may well have kids with additional needs. You may also have children with health conditions that you have to manage. You might have children with entirely different temperaments and personalities to you and your partner. Pre kids I had a really clear idea of what life with kids would be like and what those kids would be like. I was totally wrong! I love being a mother and I adore my children but they will always surprise you. Your children are their own people, they dont come into the world to fulfil our desires to become parents. I think chatting your worries through with your partner will help, has he thought about the chance of your children having additional needs? X

Well said.

Do you have any idea how insulting it is to read that so many people would be devastated if their kids were like yours? My son is fantastic, he is loving and optimistic, he is wise beyond his years about important things, he is determined and tries harder than anyone I know and there is not a single day that I regret my life no matter how hard it is. For you to be worried that your life might be life is like mine is insulting at the very least.

I've struggled to read all these, so sorry if similar thoughts mentioned.

Disclaimer - I'm a mum of two young children with suspected ADHD and one has a bowel disorder. I also have MH problems, help care for my disabled mum and somehow juggle all this with a medical career. My life isn't easy but I'm a lot happier than I was pre-children and I don't feel "devastated". I DO feel devastated that as a society there is so little help for parents like me, both from the health service and schools. That is the tragedy here, and it's good that you seem to be aware of this.

I also have two close female friends whose DH's were in car crashes and left brain damaged in their late 30s. When you got married OP did it cross your mind that you may end up as a carer for a disabled spouse? Does the reality that that could be an outcome put you off being in a romantic relationship? Personally the love I experience from my DH and children makes the grief any illness/disability worth while.

Motherhood is an absolute killer whether or not your children are "normal", my worst times as a mother were the early years before the neurodiversity and physical stuff had even become apparent. It sounds like you're not up for the emotional challenge right now and that is okay but please be open about this with your DH - if becoming a parent is really important to him it's vital to address this.

For the sake of any future children don't have them if you can't cope with any eventuality of your child.

Thank you

The reality is that mos5 babies are born completely normal. Do you know if the reasons for your relatives disability is genetic? If I was in your shoes I would seek some professional advice from a genetic expert. It’s worth paying for a private consultation.
I completely understand why you feel like this about having a severely disabled child. Most of us if we are truthful would feel this way. When child is born with disabilities they are of course loved and wanted but I doubt any parent would choose the situation.a

I wish I’d spent more time considering this tbh OP. I finally became a mum at 40 and DS is profoundly autistic with a host of other “fellow traveler” ND diagnoses. It has very nearly broken me and even now, if a prenatal test for conditions like my son’s became available, I would urge every pregnant woman to take it and consider their options carefully.

Autistic posters of the high-functioning persuasion (and I know we’re not supposed to call it that) may think that’s terrible, but they will miss the point and assume they represent every autistic person, when they actually don’t. We are not talking funny-quirky Young Sheldon stuff here - when DS was a baby/toddler, my life was daily shit-smearing, senseless violence by DS (to self and others) and exclusion from every social opportunity, from play groups to pre-school. Anyone who has never had to sew their child into a onesie in order to avoid hours of cleaning shit off the cot and walls the next day should probably think on a bit.

As it happens, DS has mellowed now and is thriving in a specialist setting, although he’s still probably 2-3 times harder work than the average child. But we didn’t know that at age 3, and I spent many years wishing wholeheartedly that he’d never been born. (And yes, I feel terrible about that now).

Just semi sober? Not totally not-sober?

Sorry if this has been said, as I’ve read OP’s post but not the full thread…

Children can be ‘healthy’ and neurodiverse at the same time. My DS is mostly nonverbal and autistic and has a learning disability meaning he is younger mentally than his age. He is very healthy 🤷🏻‍♀️

I was very similar to OP. Wanted a child, but loved my life and didn’t want to have an autistic child. I got an autistic child, don’t regret him at all and love him dearly. Would I have liked it to be different.. yes. Would I change it.. I’d like an easier life for us both, but wouldn’t change him.

Most babies are born without neurodiversity. I would say that if you want a family, you should go for it.

I think you are sensible to consider this.

I would have wanted to abort if we found out ours had serious disabilities during pregnancy. But DH is a catholic wouldn’t have. It’s definitely something that concerned me before we conceived- how we would deal with that.

people who are triggered by this topic shouldn’t read it

I think this is a hard way to live your life though. There is risk in absolutely everything. Don’t let fear drive you. You could equally be losing out on the biggest source of love and happiness you’ll ever experience.

But this isn’t about you and your child. It’s about OP and a hypothetical that doesn’t exist. I know people with profoundly autistic children and their lives are incredibly hard - their children don’t sleep, are very physically abusive to them, destroy the house etc - who wouldn’t find that to have a very detrimental impact on their quality of life?

Well, sounds like it's time to discuss it then.

Even if you adopt a child, that's far from risk free. You could adopt a child who appears to have no additional needs, but they could have SEN that becomes apparent later on or become disabled through illness or traumatic injury.

If you know you're only up for parenting a healthy child with no disabilities or additional needs then the harsh reality is you really shouldn't have children. Because any child could potentially become disabled at any time and once they're here you can't just give them back! Surely you must know that deep down. It sounds like you do, you just don't want to have the conversation with your DH.

Jesus Christ

all I can say is if that happened then the child would be lucky to get away from a horrible mother like your self and with a family who wanted and loved them

my niece has down Syndrome and she is a delightful pretty adventurous little girl and a joy

thank God her parents didn’t think like you

ive been on mn for over 20yrs and honestly dont think i have read such a disgusting comment as your reply !

I think really think of it all through is a far better option than leaping in feet first. OP’s husband might well be everyone’s favourite uncle but that is very different from being a parent.
Having a child with additional needs can put a massive strain on a relationship and the OP really needs to consider that if their child is born with severe needs, how would she feel being a single parent?

I am child free and this is one of the reasons. I grew up with family members with severe disabilities and I’ve seen how hard it can be for parents. The worry about what will happen to your child after you have gone is awful.

Good luck OP with whatever you decide.

When I was 31, if someone would’ve told me I would have an autistic child I think I would have decided against it too. But then I would’ve missed the opportunity of knowing, of loving, of raising the most incredible little girl who has made my life better without question.

I’m not saying you should have kids. I’m just saying that for the vast majority of parents (thank god), they love their kids whatever happens, even if you can’t see that now. However, of course if you feel adamant that you wouldn’t be that way, then absolutely do not roll the dice. Because even if you have a child born without a disability, there’s no promise they will remain that way for the rest of their life, there’s no promise of that for any of us.

I know how this is going to sound but my biggest fear was that my children would be non verbal and autistic. It’s the lack of connection and violence that I worried about - with physical disability it’s not ‘part of the person’ in the same way, you can still truly get to know them and connect on a level that you are both on. Equally I know a delightful little boy with Down Syndrome who is verbal, toilet trained and a really nice little character, and I didn’t worry about that either. I’ve read so many threads by desperate parents whose houses are trashed, who are regularly attacked, who have to clean poo off walls and they have no support. I just knew I wouldn’t be able to cope with that.

People don't know what they can cope with until it happens. Life will throw up the unexpected with our without children.

I have two children. I was pretty carefree when I had the first and then suddenly was hit with anxiety especially over illness. I decided to have another. The eldest is happy and healthy and the younger one is too young to tell but so far is a joy. I love being a mum and I love my life. However, when I think too much I am filled with anxiety that there will be something wrong with them. Not necessarily autism but we have a car accident, or a sudden incurable illness or for some reason they cut contact with me. Anxiety is the fear of the what ifs and I feel like I spent the majority of my first child’s life being stuck in the what ifs and im really trying to embrace and love every moment now.
it’s a gamble and a roll of the dice for sure. Some families may be make susceptible to some things. However, I think it’s important to understand and seek help about real fears and anxiety creeping in too much. Anything can happen to any of us at any time. Is it worth never doing anything because of that fear? Only you can really tell. But I would think about addressing this before having children as this could make your fears worse