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’m so sorry that people haven’t been kind about your choices. Your body, your choice, and I say that as an autistic mum of two who went the other direction.

I’ve watched parent after parent brought to their knees by trying to care for and advocate for their children.

There’s a huge amount wrong with our society that makes life even harder. NHS funding, education, social care all need to massively improve. But even with everything needed in place it’s still an impossibly hard life for lots of families.

And as often is the case it’s women who are taking on the majority of the care. I’ve seen mothers feeling suicidal because they can’t cope, don’t get a break, don’t ever get enough sleep, are providing personal care for children who have grown much bigger and stronger than them. They might be facing daily violence from dysregulated children whose needs are not being met in their school places etc They often can’t take a break because there’s no-one else. They might have funding for a package of care but can’t find the experienced staff to provide the care. Need respite but can’t get the funding agreed.

We’re failing children, adults and their families. But people don’t want to pay enough tax and NI to properly manage and fund public services. They don’t want to pay care staff enough that they can afford to live to a decent standard and to be thoroughly trained and continuously unskilled. Instead the people needed to provide outstanding, compassionate and respectful care are paid a fucking pittance and treated like shit.

They don't want to fund a benefits system that even hints at someone having a decent standard of living. How fucking dare they eh?! Grifters and chancers is what they’re called.

It’s relentless and honestly I’m not cut out for it. I know myself and I know what I can handle.

Maybe in a fully funded; functioning and supportive society it might be different. Instead, I’ll keep fighting for those who need me to.

But that child does exist, all over the place - my child, and other children, and people on this thread are saying ‘god I hope my child is not like that one’. That’s the issue that you don’t seem to understand

I understand. My friend's child is profoundly affected by autism
It's a struggle every day 24/7. Her adult daughter needs 2:1 care is non verbal, will never work, have friends or relationships, she will always live in residential care until she dies.

It's a world away from the vast number of people who mask and function very well with their version of 'autism' talking, working, relationships and even children of their own. Her life is immensely tough.

You might have a child with no disability or a milder show of autism.

I mean there are people choosing to be childfree because they hate the thought of having any child, and as a mother I don’t find that at all offensive.

I’m also not offended by anyone who hates the thought of doing my job, having my disability, or doing the hobbies that I choose to do.

You’re projecting, sorry. You can’t mandate that people can’t discuss worrying about having disabled children because it’s offensive to you.

I have a 26 year old son who defecates and urinates onto his bedroom floor. Who is violent and makes sexual threats. Who has given me a concussion. Who no respite company will accommodate. Who needs 2 strong adults to restrain him. Who will likely end up in a secure unit drugged to fuck after I am dead.

I wish to god he was different. I wish he could live a full life and be happy. I wish he didn't have to go through everything he goes through. If there was any way at all he could be different I would leap at it.

Imo no parent should ever want this life for their child or take offence at others saying they wouldn't want that life for their child.

This is so true. If everyone worried about relatives genetics & possibly having children with similar traits whether mild or severe nobody would ever have them. Every day is a risk with children even just keeping them alive. There is no other joy comparable & worry is part of the deal 🤗

I love my children but having a SEN child has took almost 100% of my life, and impacted my health significantly. It's been one long fight with everyone - my child will be independent, go to university and has achieved what everyone said he couldn't but for the past 11 years years its been me against Dr's, Schools, Surrey CC, other parents and family judging, etc. Even going against my own Husband as I knew our child better than he did and needed to advocate a different pathway.

I think you are right OP to consider whether you could cope - I would say I'm unusual as can operate on very little sleep, adrenaline highs and because of my job have no nerves / fine confronting professionals if I disagree with their plans or opinion of my son. I have fought and won appeals on school placements, ECHP's, etc and it has a high cost to the parents mentally and physically. Let alone the day to day care of a SEN child.

In my opinion you are an excellent potential parent as you are considering the whole picture. Would I do it all over again in the same scenario, probably not but mainly because of what my child has faced and will face.

But you have said it multiple times!

Respectfully, it's not about you. The OP is discussing her feelings.

Absolutely nothing to do with you.

I think you're really brave and honest to post this. I'm sorry things are such a struggle for you and your DS.

Well some people would still have them, the ones that feel they could cope. But it’s a good thing if the people who don’t think they could cope don’t have children because that’s not fair on anyone. People get joy from different things and for some people, children do not bring them joy. Do you really not understand that people are different in what they want from life and what they find joy in?

I think you should read @IncompleteSenten 's post about her life with her DS before you post things like "there's no joy comparable" and "worry is part of the deal".

I’m not in your life so I’m not going to pretend I understand how you feel and I’m genuinely sorry that this is a difficult thread to read.

But, this is also the argument used by those campaigning against screening and termination for conditions like DS. I hear the arguments about what it means for people with DS and their families but the harsh reality is this can’t be used to shut down discussions and limit others’ choices on their pregnancies and their families.

I know the two situations are very different but the arguments are often the same.

I think it’s a normal thing to worry about. I know I personally had the same thoughts. You have thoughts of having children and everyone imagines school, uni, marriages, grandchildren. No one imagines having a child with a disability.
that being said, you have children and you love them so much I do think you cope with your normal, whatever that would be. Most people don’t have children with disabilities , don’t let fear stop you. We are blessed with children without disabilities and it’s the most wonderful thing.

If you had the choice, though, would you really want to raise a severely disabled child? Really and honestly?

I don't doubt you love your child massively but that's very different to someone saying "actually, I don't want that". It's not a personal attack against you or your situation.

I have spina bifida. I have no wish to diminish your DD’s experience but at the same time I have to ask why is it life limiting ? I had to have a termination because tests showed that my child had the same condition - a certain percentage is hereditary and can be life limiting. PDA is not a life limiting condition.

Sounds like you’ve cracked it! You might want to tell Simon Baron-Cohen he can give up his life’s work now.

You have totally misinterpreted my post which was intended for the OP & just to say until it happens why worry about the what ifs. The chances of OP having an sen child just because her cousin sadly has them is probably very low.

People who are suited to parenthood do find joy in their children. If they have regrets & say if they could tun the clock back it would be no then unfortunately they've made the wrong decision. This of course is not including parents of severely disabled children who understandably may or may not have regrets.

Then don’t read and/or engage with a thread you find offensive.

Not everyone would want your life. Why does it matter though, if you’re happy with it?

" 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? "

That occurred to me reading the first post. I did think about these things, particularly so as DH is a tree surgeon and rides a motorbike. In a fairly sedate kind of way, but still. This ad was on TV a lot when I was young and stuck with me:

I had a careful think when I realised, early on, that DH was the one for me : what if I end up putting him in a box or feeding him out of a sippy cup? Not at 90- basically one of you is probably going to end up feeding the other out of a sippy cup at some point, it's pretty much a given- but at 40? His brother was killed doing extreme sports, he's had a mate killed off a bike and another broke his back coming out of a tree, I've had a work colleague whose husband was killed off a bike. I thought yes I'll risk it. When he proposed a few years later I checked with myself again- still ok with the sippy cup risk? Yes.

Before I started trying to get pregnant we thought and talked. No family history of genetic problems in early life but equally we weren't young and I knew that both my parents would likely be dead within a few years (they were), his are elderly and live far away as do my siblings so we started assuming zero help.
What if the child (then teenager then adult) is severely physically disabled? Mentally disabled? What if I die? What if you die? Are we both ok with the risk? Yes. Ok. I started taking all the vits well in advance, did more or less everything right, got Harmony testing and got lucky.
Had a second child after the same conversation (including what if it's triplets?). Got lucky again and didn't roll the dice again.
DC #1 rides ponies as I had. Had the sippy cup conversation again before we signed up for lessons. She wears all the gear. The instructors are sensible , the ponies are safe. But still. She could die, get a permanent brain injury, be in a wheelchair. Marrying DH, I took the risk for myself. Having children, and letting them ride ponies, and grow up on the farm, I've taken the risk on their behalf as well as mine.
If any of the 4 of us end up in a wooden box or drinking out of a sippy cup with one of the other 3 holding the handle....well, at least it was a conscious decision to take that risk.

You have totally misinterpreted my post which is until it happens why worry about the what ifs.

It's actually a very, very sensible idea to worry about the "what ifs".

Maybe she doesn’t want to just “cope” though.

His is an existence, not a life. I feel angry and that he has been robbed of all the things that most people have in life. He is about 6ft tall maybe a tad less I dont know and he's 23 stone at least and built like a brick shithouse and im scared of him and for him.

He is very vulnerable and most people cant see that. They only see the risk he poses to others. They dont see the other side of him that is so loving and caring at times. Im so scared of what will happen to him after me and his dad are dead that I have intrusive thoughts about it.

Caring for a severely disabled and volatile adult who will never live an independent life is very challenging and does not make me want to say things like I wouldn't change a thing or talk about how much he enriches my life and what a blessing it is to be a parent to a severely disabled adult.

He's 26. He should be dating, going on holidays with mates, moaning about his job, maybe saving up to buy a flat.

Instead he is making a variety of high pitched noises while squatting on his bedroom floor curling out a steaming turd then picking it up with his hands and putting it into the camping toilet I put in his room in desperation hoping he'd use that instead of the floor.

I'm angry. It's not fair for him that this is how he is. I would never want him to be like this and I would judge the fuck out of any parent who said they wouldn't change their child no matter what.

Because this, this is "what"

There's a whole host of other serious things to worry about with children. What if one ends up abused or an abuser, or drugs, in jail...

I have a lot of friends with disabled children (and have two ND kids myself). What I have noticed is that the parents at the two ends of the spectrum of severity seem to be happiest. There's a lot of resources, special school, respite care etc for those with severe genetic conditions and profound autism locally. Then at the other end of things there seem to be parents with mildly disabled children promoted all over the place as wonderful superpowered children excelling at sports or school. Those in the middle aren't supported at all with kids struggling or out of school, no appropriate services.

Parents of children with disabilities aren't stronger than other people. We just have to fight harder. Burnout isn't possible because no one can take our place. Divorce is far higher. Dad's are statistically less likely to be meaningfully involved. Chronic illnesses in parent carers are almost the norm due to stress. But its easier for society to say all the parents are just strong. It's a cop out.

‘Sippy cup’? Why have you decided upon this item as a benchmark of severe disability? There are tonnes of children AND adults out there that drink from sippy cups and have a great life. I don’t think you mean to be rude but what you’ve written is really offensive to anybody that is disabled, or loves a disabled person.