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.

There is no shame in wanting your children not to be disabled @Avelin. It is ok to think that.

Parenting is exhausting full stop, but parenting children and young people with additional needs is definitely doing life (pun intended) on hard mode.
My life bears no semblance to the way it was prior to having children. Before one has children, this is really hard to imagine, but it is what happens. DC1 isn't even classed as particularly 'high needs', but requires special provision in school (the fight for which has literally taken years of my life) and adaptations in order to achieve anything like age-related independence.
I love my DC with every cell of my being. They are my world. But DC1's additional needs definitely changed the course of my life, irrevocably. There aren't enough hours in the day, enough energy in my body, enough cognitive capacity in my brain or money in my bank account (having DC with SEN is financially crippling) to parent well without it being exhausting, and I'm a reasonably fit, capable, smart and well remunerated woman.

I think lots of people think about it OP. We did, but for us, we decided that we wanted children together regardless. We were both as sure as we could be that we’d be good parents to any child. If we felt how you do, we wouldn’t have gone ahead and had children as it wouldn’t have been fair on us or children.

I get it, I have a chronic illness which (by sheer luck) doesn’t affect me as much as it affects many others with the same diagnosis.

My life is good I just can’t flip the coin and risk knowingly having a child whose future might be awful.

Both my children have medical issues. My daughter has over 20 allergies, my son has a lifelong condition and what is associated with it, and adhd. I see them as absolutely perfect in every way and love them endlessly. My son is my oldest and despite everything that he has to deal with, and how I support him, I never had any doubts about wanting a second and didn't even consider if she would need extra support. When she went on to have over 20 allergies, I just got on with it.
I chose to bring those two amazing kids into the world, they are perfect and my job is to raise them and support them in every way. Medically or otherwise.
I think, as a potential parent, with some very strong views, then it is time to discuss with your partner honestly and maybe discuss in counselling. Is it just the health side, or are there other concerns with being a parent? You need to work through that. Because honestly, your worry in your post is about your needs and not about your potential child's struggles. You have to be selfless as a parent, it isn't all Arts and crafts. Maybe being an amazing aunty is your thing!

I totally agree with you and I'm not exactly sure why you're getting so much stick
I assumed everyone with children like that wouldnt be living their best life ever and although its not talked about or nice admit it, surely it's TRUE that many people wouldnt go back and choose that life?

Okay so why wouldn’t OP say this to her cousin? Because it’s hurtful. And you expect me, who’s in the same position… not to be offended?

Most people with additional needs still live very normal lives. Most people with autism are not non-verbal or violent. The chances of having a child at the extreme end of the spectrum really are very tiny. And if that was your child, you would love them and do everything for them.

Dh and I never discussed having a child free marriage. We always agreed even if we couldn’t conceive we would adopt. Dh is very much wanting to be a dad. He’s great with kids. Everyone’s favourite uncle.

This is obviously the case but using the car journey analogy, lots of people embark on car journeys everyday even though they would find the impact of a car accident devastating and very hard to deal with. Do you say to to them that they shouldn't even get into a car again?

Risk has both impact and probability elements. The odds are that the vast majority of us won't have severely disabled children. This is what most people gamble on when they have children. Very few people would actively choose to sign up to the life of being a parent of children with high needs and all that it entails. I'm not saying they wouldn't do it if they had a disabled baby though as I also believe the vast majority of parents would if it was necessary. I think pretending people would choose this though almost reduces compassion for those parents in this situation who never would have opted for this life but they care for their disabled children anyway out of love. They deserve society's respect and admiration as it's is incredibly selfless to completely alter your life plan and make so many sacrifices to care for your child.

Something to consider is that many of these conditions have a genetic element. Since it's in the family already, it is worth being aware that you may have an increased likelihood of it in a child.

You are free not to read the thread if you find it offensive.

You can't tell people that they're not allowed to discuss things that upset you, though.

Surely this is why anonymous forums exist? For people to discuss things they can’t in real life. I’m sorry you feel this way but you don’t need to be in the conversation if it’s upsetting for you and I don’t say that in a mean way

But the OP didn’t say that. She said that SHE would be devestated. And it’s ok for to have that opinion. Doesn’t mean she wouldn’t love her child, but would find life harder. There’s no offence in admitting that about HERSELF.

You would cope - you wouldn’t have any alternative.
If it’s such a big issue for you, you’d be better not having children.

I didn't lose the lottery of children by having a disabled son op - he is brilliant! He is absolutely not lesser than anyone else and to say that you fear having a child like him - I don't really know what to make of that.

I’ll take your advice on that. This will be my last post on this thread.

I have a friend who felt this way and did not have any children for this reason.
I must admit it is not something I considered when having kids but would certainly do now considering the numbers of children currently affected.

This.

Don’t be devastated for me. I have muscular dystrophy. I love my life.

I think it is good to know your limitations and your attitude towards risk.

As a teacher in a SEN school for pre verbal children, I can understand how you seeing some of the experiences your cousin has as really challenging. As a teacher, I see how tough it is and how amazing the parents have to be and it’s also the non stop advocating for their children as the system doesn’t give the support out easily.

You can never guarantee anything and I expect a lot of the people saying to you not to have children (the ones who don’t have a child with disabilities) may also have no idea what it can be like.

If you love and have always wanted children then it’s a decision you’ll have to make as no one can tell you what the outcome will be. Can you see any hereditary links within your family of who might be autistic?

For what it’s worth, the children in my class are amazing and my job feels like I make such a difference and they are so loved by their families. You just adjust your expectations and focus on their progress.

best not to have a child.
I know more than one person who had a non disabled child. then there as an accident/illness.........ended up with a severely disabled child./

Except many people don't cope.

Two parents recently committed suicide after killing their severely disabled children - and sadly, their case isn't unique either.

I never wanted children for various reasons and people used to say I'd be a good mother as I like arts and crafts and baking. I know life isn't all glitter, glue and cupcakes so I became a Brownie leader and then an Auntie. I'm no longer with Brownies but being an Auntie has been so rewarding and I have the best of both worlds. Glitter, glue, cupcakes and peace.

She’s not devastated for you or saying you should feel devastated. She is talking about how she would feel in that situation. Very different.