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.

To be honest having 3 children with a addtional need 21 19 and 11 its hard going and I can totally understand your concerns and rightly so too. You have done amazing helping your cousin it we have zero help. So well done and thank you for doing that. It is hard but the soectrum is very wide some dont need as much support as others. I think coming on here and share g is wonderful. Don't be put out by people responses. Its hard and I never wnated this life but it what God has given me and I've grown into a strong woman and I love who I am. There is so much knowledge now and more support and understanding. You grow and adapt just like you being a parent with neuro typical children all have their challenges. Being a parnet full stop is hard. But so much joy love also comes with it. Have you spoke to your DH about it? What are his thoughts. Unltimayly it mainly rests on the mum looking after the children so I hear you and I see you.

No offence here. If I knew then, what I know now, I wouldn't have had kids.

I think your feelings are valid tbh. Genetics play a big part in autism/ADHD etc and if it's in your family then there's a chance. Are you NT? Whos the ND parent of your family members? You'll be able to follow it back through the family.

It isn’t more common. We just know better how to diagnose and treat children.

That’s deeply unfair.

You can always click off the thread.

This is absolutely a valid concern, and I commend OP for giving this serious thought.

Babies that would not have been treated in NICU in the nineties are now bring treated , but are being left with huge problems. My eldest son decided to try to be born at 22 weeks in 1992. I was told that, if he was born, no attempt would be made to save him. If he was alive he would be wrapped in a blanket, given to me and allowed to pass away .That doesn't seem to be the case anymore.

What’s I’ve noticed is that the ‘milder’ autism (which is often described as quirky, high functioning etc) tends to be genetic, but the severe form (non verbal, smearing, learning disability) seems to come out of nowhere.

I agree with you, your decision is completely selfless. It comes from lived experience, which i totally respect and have a friend who has made the same choice for the same reasons. I think what i was trying to convey is, some people being selfless isn't an arrow in their bow.

TBH I think you are sensible! Some people on here ( usually Mums!) have a terribly difficult time of it.I know no one can really tell in advance ,but some Mums have another when they are already struggling along(No critcisism here just total admiration for these ladies) Why not have a few years child free first ? Most people have no guarantees in life anyway

I have ND husband , child - I suspect I am ND. Child has PDA - it’s a nervous system condition / connected with autism it’s a pervasive drive for autonomy - our whole like is on eggshells - it’s so stressful for her sibling too. I know there is a biological urge but if you or your DH are ND then there is a strong possibility the child will be too. Now I see the string of autism in my DH family, my MIL is most certainly autistic - she is so so so controlling I can see she may also have PDA, I’m certain I have ADHD. Life is fulfilling but challenging so very challenging - it’s exhausting and I would say having the kids is amazing and they bring so much to us. But it’s not easy,

My children both have additional needs although they were quite mild but I fully agree with you.

I’ve seen friends and family with children with severe autism and I don’t think that I could do it but I also think that I’d also just get on with it and do my best which is what most parents do.

we all want our children to be perfect and preferably do better in life than we did, it doesn’t always work out like that and that’s fine. You just do your best, love your kids and get on with it. We just have reserves that mean that the amount that we can cope with gets bigger as needed.

Fostering is definitely not an option for someone who wants perfect, healthy children. Most have faced a lot of trauma, and many have mental health issues.

If I’m honest, it’s one of the reasons I only have one. I too was worried about this when I thought about having babies, but then found out I was pregnant at 16 weeks! I didn’t want to tempt fate having more and thought I couldn’t be this lucky a second time around if I considered having more.
I have friends with DC with additional needs to varying degrees, and there are a few of the kids who I honestly wouldn’t be able to cope with.

This makes sense biologically

I'm in a similar position. I chose to have a child with DH knowing he's autistic, knowing how much it's in his family, and knowing it was pretty likely at least one DC would be would be autistic. The presentation in his family sounds like the presentation in yours - and so far that's what we've got with DS. It was a dice roll, but one I was prepared to risk. Which isn't to say that I've always found parenting DS easy! But it's also far from devoid of joy.

Having children is an exercise is loss of control. In so many ways, you don't know what you're going to get, or how its going to change your life. As someone who likes to be in control, that's not been an easy lesson to learn! But as others have said, being disabled isn't a worst case scenario. I think what you're really afraid of is having children who are unhappy, and whose needs, behaviours, actions make you and the family unit unhappy. And disability is far from the only scenario in which this could be true: some people will have children who do terrible things, or whose personalities mean life is very hard for them, or for other reasons remain dependent on parents for long periods of time. I think you have to be accepting of some risk and some pain as part of being a parent.

I decided not to have kids because of the genetics in my family. My brother and sister have had kids and ......well, I made the right decision, put it that way.

I also worried about this OP, but there are things you can do to mitigate against the chance of having a child with profound autism. Take prenatal vitamins for 3 months before conceiving (not after), make sure your thyroid isn’t under or over active, check your iron levels and address any anaemia, and generally eat/drink healthily.

I am 10 minutes into this and in tears. Fucking hell it’s hard to watch him ragdolling her around the kitchen like that. Awful

It hasn't 'come out of nowhere'. It was just hidden from the world in institutions.

Not only have you completely misread what I wrote, where were these ‘institutions’ between 1980 and 2010?

I also wanted to say that lots of people with genetic illnesses running in their families go for genetic screening and think long and hard about whether to have kids. ASD/ADHD is also genetic so I dont think you are wrong in feeling the way you do or even that unusual.

I actually think it's good to think about it. I am disabled. My life is fine, but it's not easy and some things I can't do which others would never give a second thought. My parents' life was not easy either, and they were isolated by several friends and some family, who just couldn't deal.

It takes a lot to be parents and even more when the child has additional needs. The way I'm now realising how hard my parents fought for help and support for me is sobering.

If you're not sure you can do that, don't have children. I don't. Besides, anything can happen at anytime. Not all disabilities are evident at birth, obviously.

Well, these types of things are generally genetic and also linked to older age parents. She's your cousin, but in what way if that makes sense? You're both quite young. Also IVF increases the risk of the baby having problems not surprisingly.
I don't think it's unfair what you've brought up at all.
I've got one child with additional needs - would I have two children if he had been born first? Absolutely not. Always baffles me people saying they've got say 4 kids with problems (seriously, you'd stop at one, wouldn't you?!)
You're right. It's damn hard work. Love my child to bits but no, wouldn't wish it on anyone else and it's heartbreaking for him too.

One of my kids was born prem & had a really difficult first year, it wasn't clear if she had a life of special needs/health issues ahead of her.

I would say... its different when its your kid. Its hard, but you have a love for your child that helps you to find a reserve of strength. I have two friends with children with special needs that mean lifelong care but honestly they are lovely kids and seeing the love their family have for them (and vice versa) brings a smile to me. One in particular i see a lot, and her daughter, while difficult, is so lovely, she is affectionate and never fails to make me smile.

I don't want to down play their challenges but their DC are loved and lovely and i would never ever choose a childfree life over DC like theirs.

I've got one child with additional needs - would I have two children if he had been born first? Absolutely not. Always baffles me people saying they've got say 4 kids with problems (seriously, you'd stop at one, wouldn't you?!)

No? I have a few friends with quite severely disabled kids & all bar one went on to have a second/third.

I think it's good to give it some real serious thought. Just keep in mind that all children are an accident or illness away from disability and no one thinks it will happen to their healthy child until it does.

So it may not be a great idea to have a child if you do feel so strongly against it.