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.

No she didn’t. She didn’t say she would be devastated to have children like that - she indicated that she loved them. She said she would be devastated to live her cousins’ life, caring for the children. That’s not the same thing at all.

Think your getting a rough time here OP, there is nothing wrong with saying they if you had a child with additional needs you would find it hard. Most parents with children who have additional find it challenging. I know many parents and while they love their children they wish they had been dealt a different hand.
You have a family history so your realistic to consider this could be a possibility.
I never gave having a child with additional needs a second thought, mainly because I wanted a baby, my baby no matter what. Neither of my children have any additional needs but can be challenging as they are children, pushing boundaries and learning about the world.

I understand what you’re saying but the thing is - this is what you sign up for when you take this jump. And every day after as life can change at any time. I think you’re being honest and thoughtful but no one can promise you anything and if that fear is more intense than wanting to take the risk then you really should have another talk to your husband. Not to catastrophise, but to make sure you are both fully committed to whatever life might bring.

It's not semantics.

Couldn't cope and being devastated are completely different things.

Maybe that's not how you read it, but given the op and updates it's very obvious.

It doesn't matter who you were talking to, it's the same thing!

You're telling people it's not okay to say certain things because you find it offensive.

Please read the poem welcome to Holland. A friend of mine mentioned it to me (we both have disabled children) it perfectly explains the differences in parenting children with needs. It’s not less, it’s just very different from what I ever imagined. I have one child who is typical and one who has a number of life long conditions- would I change it- no they are wonderful incredible children. Is it easy? No diagnosis, treatment, EHCP battles, living in a society that lacks empathy are definitely the biggest challenges- is my son a challenge? No. Would I change him? No, I want the world to change to adapt to him.

anyway read welcome to Holland it absolutely nails it.

Hi OP,
you're brave to post but I feel the exact same. I have a DD through IVF and had the full panel of genetic testing done possible on the embryos too. The genetic testing doesn't rule out neurological conditions like autism or ADHD but it does lots of disabilities and serious inherited diseases.

I have a few non related close people in my life with profoundly autistic children and without wanting to cause any offence, would not want that life for me or a child. That said, if I were to have a child with autism then I would do the very best I could of course and it's part of the risk having children. I don't have any family members with autism and neither does DDs dad. We spoke extensively about having a child with a disability and always agreed on if the scans or tests picked up any missed genetic disorders like DS or trisomy we would end the pregnancy. That's a very personal decision and a lot some people will probably judge. It's okay not to want a life with a severely disabled child, I don't think anybody in this world sets out to want that life for themselves. I am in awe of the commitment and the dedication to parents of profoundly disabled children.

I am not with DDs dad anymore. If I met someone and was lucky enough to settle down one day I wouldn't rule out further children, as long as that person didn't have any autism or other genetic disorders in their family history.

essentially I felt / feel the same as you. I personally would be scared to and would rather not raise autistic children. But the benefit outweighed the risk and our risk factors were low, and as I said, if any of my children / child did turn out to be autistic I would do my absolute best.

"anyway read welcome to Holland it absolutely nails it."

A lot of parents of disabled children don't like that poem.

I understand how you feel and I agree it would be really hard. My husband’s brother is autistic and it was a fear for me that our child would have it too (we have a toddler now but they’re not showing any signs of it).

That said life involves taking risks and you could miss out on the greatest of joys. And even if any future child is neurotypical you could face something else. I had a long battle to have a child and had several miscarriages, and I was chatting to two mums recently who had both had stillbirths. We never know what’s coming and you can’t protect yourself from everything.

@Avelin this worry is perfectly normal. It’s why people stop drinking alcohol, stop smoking, take prenatal vitamins have ultrasounds and do prenatal testing.
I do think MN has many posters who’s family is impacted by SEN so not the best place to ask.
Speak to your family doctor to understand the risks better.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

If I didn't already have children, I don't think I would take the risk either OP.
I had children when I was young and honestly it didn't cross my mind that they would be disabled or how that would change my life. I think the older you get the more of life you experience and become aware that it doesn't always work out how you plan.
If I were you I would research the statistics and go from there.

If you fine and dandy with your life before, I wouldn’t let one post from a complete stranger on an anonymous forum make you ‘feel shit about your life!’

Having just had a read of it, I can't say I blame them!

How so?

Autism seems to run in families so you are right to be wary. Is it on your cousin's side or the partners side? It can hide in families too. That quirky uncle or aunt?

Having kids is a lottery. You don't know what you are going to get. If you don't think you could cope with a kid with additional needs, then you are right to be cautious.

You love your own kid, but it is bloody hard work. Professionals can make it worse. Life can be really difficult for numerous years. Well into their adulthood. I'm so over parenting and school /college runs in mid fifties. Yes I love them but 20 years of hard graft is not fun.

She didn't say she would be devastated to have kids like yours though - she said she would be devastated to lead her cousin's life.

There is a difference.

She loves her cousin's kids.

She observes her cousin's life and doesn't want to live whatever life it is that her cousin lives.

That's allowed.

I didn't want to be a single Mum - I could see how hard it is.

So I didn't go ahead and become a single Mum the first time I got pregnant. No reflection on single Mums or their parents.

(And I am fully aware that I am only an OW or the death of DH away from the chance of becoming a single Mum. No guarantees in any aspect of parenting)

Is anyone else autistic in your family? If not the gene might be from your cousin’s partner? Autism is usually from having older parents or parents who are autistic.

I like the poem it absolutely reflects the conflicting feelings of expectations versus experiences and how difference isn’t less it’s different. It helped me greatly

You can adopt what you know to be a healthy child. But what would you do if they develop a disability later on?

I think its a valid fear.

I love my son dearly - he is autistic and needs a lot of help. It can be very challenging and hard to navigate. Frankly, trying to help him has taken over my life.

Could I have predicted it? No, I had children at a similar age to you, there were no major red flags. It's just the hand we were dealt.

Would I have made different choices if I'd known beforehand? It's hard to know but what I do know is that the love you feel for your own child is so breathtaking that for me, if I had to do it all over again and have the choice, I'd still pick having him every time.

So I guess the question is whether you'd feel fulfilled without kids? I always felt that my life would be missing something without them and having a SEN child hasn't changed my view.

Since screening became available, the number of children with Downs is much lower that it would have been, given the high increase in risk with older parents.

It dropped by 54% for some years as a result of non-invasive screening then crept back up as parental age at birth increased to many more babies born to over-35s.

But for many people, it is "less" to raise a disabled child.

I know that's unpalatable to hear/read, but it's true.

OP you say your cousins children are autistic - do you have neurodiversity in your family? For example relatives that are dyslexic, older relatives that might be undiagnosed. ASD is often genetic and if it does run in your family then there's a reasonable chance you might have a child that's affected. However it's also possible that it's been inherited from their dad's side which means your chances of having an autistic child aren't raised.

Maybe that's neither here nor there to you and it's a fear or any type of disability rather than ASD specifically and that's just a risk you can't do much about.

I have an autistic child, he's high functioning (please do fuck off if anyone wants to police my language) and has been wonderful really, much easier than many NT teens because he is so risk averse and is working and living independently. If I had known he'd be autistic then I probably would have chosen to be childless and I would have missed out on the best thing in my life.

Choosing not to have children is a perfectly valid choice though of course. I wouldn't want more than one (NT or ND), but having a child is a very special thing if it is something you want.