Scared to have children in case they have additional needs

Nobody suggested OP was misleading anyone. The fact I and I mean I believed there were genetics involved due to being a cousin is my interpretation of the post & according to responses there were others who read it the same way. This does not mean the OP tried to mislead us. Calm down & accept the post for what it is,simply trying to help

Autism is usually either genetic or because of older parental age. Mid 40s is probably why the children have significant SEN.

Plus research appears to show a link with being born prematurely or being born to a mother who was obese or had gestational diabetes when pregnant.

"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"

I was using it as a sort of shorthand for a variety of scenarios. Like the young husband in the road safety ad I posted (actually watching it, it's a cup with a straw) paralysed from the neck down, or my best friend from school's brother, who is severely autistic, non verbal, epileptic and used to have meltdowns like the boys in the documentary posted upthread. I saw one in action when I went to visit her aged about 16. It was mostly targeted at himself rather than others- he would scream incoherently and beat his head off the wall or the floor- but my friend and her mother regularly got bruises when he was lashing out in all directions, or when they were trying to get between him and the wall to stop him knocking himself out. When he reached mid teens he became too big and strong for them to manage, and he's been in residential care ever since.

I get it OP. Autism runs in my family (I'm autistic) and in DH's and it's one of the big reasons we've decided not to have children. Even without that family history, deciding you'd rather not have children over risking raising a disabled child is a perfectly valid choice to make.

OP hasn't misled anyone - severe autism or disability can happen to any of us, whether there's a family history of it or not.

Autism is usually either genetic or because of older parental age. Mid 40s is probably why the children have significant SEN. Your cousin must have a very stressful life 😔

To be fair I think we were led to believe OP was worried about genetics & the possibility of having a child with severe autism. I understand having been exposed to this when many have no idea about what it's like raising a child with this disability before starting a family it's obviously a concern.

OP I think you should accept your step cousins situation although heartbreaking there is no reason under the sun you should equate this with what will happen to your children if you choose to go ahead. We all have our troubles in life to a greater or lesser degree. This problem is not yours to worry about apart from being there to help if & when you can. Good luck on your journey to being a mum but only if this is what you want.

None of the people I know with severely autistic non verbal children have a history of it in their families. And their other children are NT. I don’t think this form is genetic, if I were to take an armchair guess.

Look at Camilla Thurlow’s child - she is youngish, healthy, her husband the same, they have 2 NT children and a completely non verbal autistic child. They’re quite open about things in their social media - their child sleeps poorly, self harms, has meltdowns and their lives are basically completely reorganised around what will keep her calm and happy. It looks very very difficult.

Agree. As a disabled person, I'm not offended, nor do I find it rude.

If she’s a step cousin then she won’t share any genes with you. Are you biologically related to anyone who is autistic?

I don't read it in that way - she's using an analogy, that's all.

When I see how hard it is for parents with severely challenged children, where the parents are 24 hour carer's, no break, no support, permanent worry about how their children will live after they have gone, I can well understand someone like the OP, seeing it up close, thinking she would be devastated to find herself in such a position.

A friend of mine with three siblings that each had a child with huge additional needs said she would rather be childless than to risk it.
I didn't think she was the least bit unreasonable to make such a choice.

I think the parents of such children carry an enormous burden with very little support from the state.
I have the greatest of admiration and respect for them.
I have 2 children with dyslexia, and one with adhd and that has nearly broken me at times, ensuring they all meet their full potential.

I also know that some people have it 10 times harder than me.

You are WELL within your rights to be angry and I am so sorry that you don't appear to have much (if any) external support.

I hope the posters talking about "finding joy" and loving your child regardless can read your post and have a good think about what they're saying and the realities of what disability can look like.

It depends on the child - it may not be life limiting as in the medical definition however my friends child at 6 years old attempted self harm in various ways and also tried to jump out of a second floor window because he was so distressed and lack of understanding of his condition. My friends are very supportive, accessed all help - but now have bars on their windows and realistically know their child may choose to end their life at some point. PDA is very isolating for the child and parents.

Words can't adequately express, however I am very sorry for the loss of your child and the challenges you face. We have genetic conditions within my family.

‘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.

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.

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"

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

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".

" 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.

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?

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.