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.

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.

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.

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.

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

I’m talking about children who are severely autistic. My cousin has her hair pulled, is punched, bitten, scratched, spat at etc by one of her children. The walls in her house are covered in holes. My husband recently put padding on his walls as we were convinced he was going to give himself a concussion (which he ripped off overnight). If my nephew is having an attack it takes two grown people to hold him from harming himself/others. And he’s still relatively young. It’s very distressing. I can’t deny if that became my reality it would be absolutely horrendous. My cousin sends me pictures of her injuries and I just want to weep for her. Both boys wear diapers. I just don’t know what will happen as they get older. I’m already reaching a physical limit as I’m only 5 ft 3.

This is a step cousin but we weren’t raised with those labels. Ive known her all my life and she is a wonderful friend to me but her life is so so tough now.

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

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

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.

Neither of my parents or sibling are autistic. And the same goes for dh.

But my cousin can’t track autism really either. She has a grandad (who she only met a few times) who was reserved and introverted so she suspects possibly was on the spectrum. But nothing like what both her boys have. So it’s a bit of a mystery for her too.

Cousin and her husband had children later in life (mid 40s). Which cousin suspects is possibly more of a factor.

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.

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 😔

I didnt mean to mislead at all. No one in cousins immediate family has autism either. It seems to be incredibly unlucky that both her children are afflicted to such a severe degree. That’s what is so anxiety inducing

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.

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.

"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.

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.

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

OP, one of the things I have observed about mumsnet over the years is that there seems to be a statistically significant number of people with either disabilities themselves or offspring with disabilities. It’s certainly not representative of my own community.
FWIW, I feel the same as you. I had all the tests I could to ensure a healthy baby. I too would have been devastated to have had a disabled child. And just because some people on this thread are upset, you’re entitled to discuss it. No one is born with the right to not be offended.

Do you know a lot of people who have disabled offspring? I ask because in my Real Life, I know very, very few families where their children have disabilities. A bit of ADHD here and there maybe. So few that it would never have occurred to me not to have children.
If you actually want children, then have them. Have the harmony test. And don’t wait until you’re 40!

In both our families we cant find it either.
My husband was a later dad, 40+ for all 3.
I think this does play a part, not that I would ever dream of saying that to him.

Haven't read the whole thread but I really disagree with the people saying you shouldn't have kids if you feel this way.

I think it's much less of a reflection of whether you should have kids and more of a reflection of you having an accurate idea how hard it is having children with complex needs because of spending time helping your family member and their children.

I was in a Facebook group with about 100 mums who had similar due dates to me when I was pregnant with my daughter. When the topic of pre-natal testing for chromosome problems (eg Downs Syndrome) came up, a few people said "we're not bothering because it wouldn't make a difference Hun."
But the only 2 people who said "actually it would make a difference" were the people who had grown up with a sibling with major complex needs (not necessarily that they wouldn't continue the pregnancy but it did make a difference and was useful to know).

I thought it was telling that the people who were most well informed by their life experience had this view.

I’m not mandating anything but I am explaining that it’s really offensive as are many others. The other examples you give (other than your disability) are in no way comparable to what many people are describing.

I’m also not projecting anything, I have no discomfort, issues or unhappiness about my life which is exactly why it is offensive to read that some people have pity for it or would want to avoid having a child like mine.

She meant imperfect not unhealthy obviously.

I’m sure your children are beautiful ❤️.

The OP clearly has a very glamorous view of parenthood, probably best not to have kids.

If you don’t want a disabled child then don’t have children. You can’t guarantee you will get a healthy child and if you can’t handle one with disabilities then don’t be a mum .

Thank you for your honesty, @IncompleteSenten. Many pp have said they wouldn't change their ND/disabled child - well, good for them. But every child is different, as are parents. One parent will cope well with something that another can't.
Your son sounds profoundly affected, and I don't know how you cope. Will there come a time when you have to move to Plan B, ie residential care for him?
Really feel for you 💐

I'm sure the thought of residential care would be heartbreaking. Personally although it would feel like losing a limb I have absolutely no doubt in my mind I would opt for this as long as I had access & home visits etc regularly.