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.

What would you do then if you had a healthy child who them got disabled...illness/accident/cancer....would you stop loving them/give them away? Best you don't have children. I think the word you're looking for is eugenics.

It's a tough topic but realistically there's always going to be risks with any pregnancy. I had similar reservations before having children because I work in the disability sector and I know how challenging it can be. I thought i would fall apart in that situation. My son has moderate autism and it was very difficult in the early years but we've worked really hard getting him the therapies and supports he needs and we have a lovely life. There's challenges but he's happy and healthy. Best of luck whatever you decide.

OP - I do not think you have been insensitive - you love your young relatives deeply, are involved in their lives and help your cousin.

Of course parents who have children with disabilities and SEN love their children unconditionally. I have a Dc with a physical disability who has required really confronting treatment and surgery from age 1 onwards to be able to be mobile. I would not wish that on any Dc and as parents it nearly broke us. I still feel traumatised.

I have two friends with non-verbal autistic young people who require intensive 2 to 1 support night and day. Their lives have been one long struggle - though as much to do with the fight for support as the condition etc of their dc. They have been unable to work for lengthy periods, gone without sleep for years, been injured. No loss of love for their treasured children, no reflection on the value that those children bring.

But in all honesty, is it a life someone envisages when they want children? And does recognising that cast aspersions on children with SEN, or their parents? personally I don't think so. I wouldn't see it as a comment on me or my Dc if someone had a termination if their baby was found to have the same condition as mine.

It's always a thing that can happen.

There are conditions that can be tested for during pg. Not ASD or learning disabilities that have no physical evidence (e.g Down's Syndrome) but there seems to be such strong evidence for the heritability of ASD that if there are no ASD traits on yours or your DH's family I would have thought that the chances were low - low anyway, whatever your family history.

Would you be happy to live your life having never become a mother? On the off chance?

There isn't a 'type' of parent who is more 'strong' than others - parents just love their kids and do what they can.

Over 80% of adopted children have recognised special needs. Children are only taken away from their parents in this country if the parents (and grandparents) are in incapable of rearing them or they are abusing them. It means the odds are against these children genetically and environmentally.

Why isn't it fine? Because you find it upsetting?

Women making a decision that’s right for them as an individual is not eugenics.

I think you are very sensible to consider the consequences if you have family members with a genetic tendency you do probably have a greater chance of issues.

My friend has two autistic primary aged kids and while its manageable at the moment, they will be taller and heavier than her in a few years and once she can’t restrain them,`I’m not sure what she will do. Her DH has pretty much checked out as he can’t cope. It’s hard to see how they will ever be independent how they are at present. No one will look after them as their behaviour is so challenging, partly for fear of them hurting themselves, let alone others. She is amazing, but I know I wouldn’t last five minutes in her situation.
My kids are grown up, born while I was mid 20’s - at the time there were tests for Down syndrome which we did, but I can’t say other special needs crossed our minds, but it probably should have done.

I have an autistic child and no regrets but I do see/know parents from groups etc with far more ‘severe’ children and I really wonder how they cope, especially with how crap available support is.

Tbf I have a lot more respect for those who say ‘yeah I would struggle’ than those (often seen on mumsnet threads) who have nt kids but insist they could easily parent an autistic or ND child because they have ‘firm boundaries’ 😵‍💫

Because its rude and offensive.

As I have said multiple times, recognising you couldn't cope in certain scenarios and talking about that, fine.

Looking at someone's child and saying you would be devastated to have a child like that is pretty shit.

You shouldn’t feel shit about your life. OP isn’t intentionally having a go at anyone, just stating how she feels about putting herself in that situation. I’m a great believer in the old saying that you don’t know what you’re capable of until you’re put to the test, but I don’t think it’s harmful to ponder on whether you would be up to the task, or not to want it.

There is a HUGE difference between not wanting someone to be born to begin with, and killing someone who already exists and has a life

However, the reality is that many parents who end up with severely disabled children can't cope and end up relying on 24/7 state care. There are cases all over the world where disabled children are abandoned in hospitals etc. because parents can't cope. Some choose to end their lives and those of their children.

I think it’s realistic and honest to know your limits and it’s worth discussing with your dh. However the situation may be very different once you’re in it, plus it may not happen.

Im sure most parents would not choose to have a disabled or autistic child but once the baby arrives your love for them kicks in and you cope and thrive. I think it’s easier to deal with it rather than looking in from the outside like you are with your cousin.

I have a friend who has 3 dc with severe autism and I often wonder how she copes and think I couldn’t do it, but she is fine and has a healthy marriage despite the pressures on them. They are a strong family unit and going through life just the same as us despite the added pressure…..

"She is amazing, but I know I wouldn’t last five minutes in her situation."

You probably would because most people just get on with it. But it also fine to feel you wouldn't want that life.

I think @Avelin is wise to look clearly at how she feels, and what she is prepared to risk.

We had similar discussions and decided where out lines in the sand were. Every bit of screening available, but accepting the risks of anything we couldn't check for.

One friend decided, seeing her sister struggling with a child with disabilities, she wouldn't risk it.

Another refused any testing because she knew she would cope come what may. But she thought it all through.

I think anyone who doesn't at least think about the potential risks is daft.

You don't have a right not to be offended in life.

I'm sure it is shit to hear, but I don't know anyone who would actively choose tor raise disabled children - and it's okay to say "actually, I've seen the reality and it's not something I would want".

But saying you only want children who are healthy/have no additional needs is!

I say this as a mum of 3 young adults who all have additional needs, 1 is pretty severely affected by ASD and a physical disability. There are many things which can be hard. Some children get cancer as young children. Some end up with addiction problems, are badly bullied or become teenage parents. There are car accidents, terror incidents etc.
No-one knows what life will throw at them and you can never prepare for many life events. Bringing up my DC has been tough but I would not change it. They are all well adjusted (imo) and live happy fulfilling lives.

Even if you have “healthy” children there are no guarantees.

With the best will in the world though, it is usually mothers who end up bearing the brunt of the work when a family has a child with additional needs. This I think makes it easier for men to think they could manage - because it wouldn’t be them doing most of the ‘managing’.

OP didn’t say she would be devastated to ‘have a child like that’. She said she would be devastated to have to live the life of her SiL who has children with additional needs. It doesn’t stop her from loving the children, she’s just acknowledging that she hasn’t got what it takes to look after a child with high needs. There’s nothing rude or offensive meant, and that you’ve taken it that way is not on OP.

No, it's not. It's a perfectly okay thing to think.

Nobody WANTS their child to be disabled or have additional needs.

Can you point out where I said I have a right to go about life without being offended?

And yes, I've said multiple times it's fine for op to say it's not something she would want.

When you have a baby there is no guarantee things will go to plan, but if you want to family it’s a gamble you have to take. Do what you can to make your pregnancy a health one and dive in with optimism. You are both young, hopefully you have healthy bmi, eat a healthy diet, get regular exercise, don’t take any medication during pregnancy and obviously no drinking and smoking. Also try and keep stress down, but don’t get stressed about being stressed iyswim. If you do have a child with disabilities you will love it and you will cope. Life will change but you will cope.

No it isn’t. Far from it.

You could be disabled yourself any day. Or your partner. It's not worth cutting yourself off from the joys!

You've said multiple times "it's not okay to say x" and when I asked you why, you said it's because was "rude and offensive"