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.

I agree. I think it’s reasonable to consider the implications of having a child with SEN @Avelin . I don’t think your post was insensitive or rude.I was a teacher for many years. I worked with families who coped admirably with caring for a disabled child. I also worked with families that were torn apart by caring for a disabled child. It was also invariably the mother who was left coping on her own in those cases.
I also agree with @goody2shoozregarding discussions on birth injuries.Years ago it was just a given that women had children (they had little choice in the matter).I can remember my DM commiserating with friends who found themselves pregnant multiple times. There are many different paths to a fulfilling life nowadays. I hope you and your DH can reach the right decision for you both OP.

You know you wouldn't cope. So don't take the risk. It's that simple. Nothing wrong with acknowledging the limits of your own abilities. I was too naive to even consider the possibility that my child would have special needs. It's fortunate that he didn't. Because I would never have managed.

Talk to your husband.
It may be that children are not the right choice for you.
You cannot guarantee anything and if you feel strongly that you can only be a parent to a "healthy" child then you cannot be a parent.

My children are both disabled. It is hard. They are in their 20s now and it is still hard. It will be hard until the day I die.

The truth is that not everyone is cut out to do it and if you arent, then you shouldnt.

@Avelin, I can completely understand these worries and fears, in fact I think it's something everyone should think about before deciding to become pregnant. I question those who are saying being a parent is not for you because you are having these thoughts and concerns. I'm a social worker, studied child psychology and am autistic myself, so it's something I am very aware of and that did cause me a lot of worry. I do not live in the UK, so something may be different but let me tell you what worked for me to help.

We did a lot of research of services available that would provide support, public and private and we delayed having a baby so that we could save money. We saved a ridiculous amount of money, but now we know we can go private for assessments, Occupational Therapy, Speech and Language Therapy, Play therapy etc. We can pay someone to look after the child, so we can have a break if needed. We also got ourselves tested for any genes we might be carrying. Again this was expensive so I understand not possible for everyone. I had frozen my eggs in my a few years previously, and that gave us more time. That's one thing I would highly recommend doing.

I would do research into things like sensory stimulation for your baby, exposing them to allergens at a young age, establishing communication skills early, baby led weaning etc. Early intervention is so important. Look at parenting programmes, some of them are amazing and you learn so many new skills and techniques around supporting regulating off emotions. Look at school's too, do your research around them.
Knowledge is power as they say and the more information you have the better prepared you are.

OP, i don't think you are being insensitive , i have 3 children - i'm not going to say if they have any disabilities or not , my opinion remains the same.
You see the reality and know how hard your cousin's life is at times , your fear is perfectly reasonable.
I'm quite certain you don't go shouting your opinion out to everybody , but you are entitled to feel what you do.

You’re not alone op. There’s a few reasons I don’t want children, but this is certainly one of them. I love my job and career and the idea of having to give up my work to care 24/7 365 for someone for the rest of my life (I.e. if I had a child with severe disabilities) terrified me. I lift my hat to anyone who can do it, because it is so amazing and selfless, but it is not something I could do.

people on here will probably flame you and say it’s insulting, but I get where you are coming from and the fact you don’t mean offence.

it would be far worse for you to have child who is disabled and then resent them, than to never have a child.

This is what I think every time having a disabled child is mentioned on here.

There are actual mums who do care for their children on here, so it is very insensitive… even though it’s probably not meant to be.

I would take life with my ‘extremely autistic’ son over and over again over life without him. Yes our lives are difficult, we face big challenges, but the love he has for us, and us for him, is just bigger and more important than anything else.

Some people might not believe that we could be that happy but how could they know?!

It's not unreasonable to have these fears. They're fairly common. Only you can decide if pregnancy and parenthood is worth the risk - remember that pregnancy raises the risk significantly of becoming disabled yourself.

I was disabled in-utero. I've known as long as I can remember that I wasn't what my family wanted - not only did some of them not like the audacity of being a girl, but I had further audacity to not be able to be a girl properly in their eyes because of my disabilities. I'm slow in many areas, I've needed mobility aids at times while also having been a very physical child, I fumbled my way through childhood and into adulthood in many ways. I was told very young that marriage is horrible, girls like me don't marry and should be glad of it, and the last thing a girl like me should do is have kids. I was told at a young age that kids like me are just burdens.

So I married young, and have four kids. When they were little, I used a mobility scooter to go out rather than a pushchair. I'd get asked my strangers how I do it, they saw a disabled mother of young kids, but to me, we were normal. While I have disabilities from before being born and a few that were acquired along the way, they're my normal.

And yes, I have disabled kids, though one prefers to call it difficulties in large part because he doesn't view his as bad as others in the family (he's been there when we've cared for family members with terminal illnesses - his idea of normal and ill health may be a bit skewed too). I wouldn't call any of them extremely so, but others may view them differently particularly when looking at them as toddlers/very young when very physical was a good description.

Couldn't cope and being devastated are completely different things
How so?

There are plenty of things we can't cope with that don't devastate us.

I can't cope in a loud office environment. In the office I work in, I can hear pretty much any conversation had at typical volume and if there are 5-6 going on at once, I can't cope, my brain fries, I can't hear my own thoughts to work, I will go find something to do out of the office for a bit.

I'm not devastated by people talking. I'm actually glad they're enjoying themselves, it's just not something I can cope with hearing at all once.

That said, yeah, parenting a very challenging child can be devastating. I don't think that solely means disabled children, not all of which fall into being very challenging. I've supported parents who have a child in a Crown Court dock - I can only imagine how devastated I would be to be their shoes. I had a brother in a similar situation (we weren't in the UK then so not a Crown Court, but similar level of severity) and living with that was bad enough. The only thing my parents ever said about it was my mother admitting that having to leave him the first time made her weep, that it broke her heart - and I never saw my mother cry, she was a turn sadness into anger kind of person. There are multiple ways parenting can be devastating - whether that's worth the risk is something only the person going into can decide, and I don't think any of us can ever know all the factors that might break us.

I think the chances of adopting a child with SEN/disabilities is high, often their bio parents will have SEN/disabilities, and that led them to not coping as parents.
Do you want your own biological children who may have a slight risk of disabilities, but your DNA/personality, or a child with completely unfamiliar DNA/inherited personality traits/probable SEN?
Im not sure adoption is for you

I watched this programme. It is disgraceful the lack of support, respite and residential care for these severely disabled children. The impact on siblings and parents is unrelenting. The child and the members of their family are at serious risk of injury.

@Avelin
Well, all the children (my great-nieces/nephews) that my children and her cousins have, all have a degree of autism/on the spectrum, so I am guessing its hereditary on my husbands side as nothing on my sisters side. So you would be right in having a chance to have a child with disabilities

Of course. I was just highlighting the fact that it can change. Maybe having children isn’t right for OP

I'm autistic, and got sterilised as soon as I could, because the idea of creating more people who'll suffer through life in the same way as me (or possibly worse!) is frankly revolting. Rolling more dice with my crap genes would be a cruel, evil thing to do.

I keep quiet about it in real-life, because people are incredibly judgey and nasty. They don't know about my struggles and how hard my life has been, though.

(Ah, it's refreshing to have been able to say that. Thank goodness for anonymous forums)

Despite how it seems, especially on SM, most children (statistically) are born and live without difficulties. Obviously, it’s a risk, but life is a risk. 🤷‍♀️

I don’t see anything wrong with your worries. Of course they would be loved and you would make it work but if you were given the choice of a NT and ND child, I’m sure most people would choose NT whether they want to admit it or not.

Having said that, out of all of the ND children I know including in the family, most of their parents have had them later on in life (late thirties and above). Maybe that’s just a coincidence.

I was ambiguous about having children, then had that decision taken away from me, and now later in life can absolutely endorse the quiet joy of being a favourite aunt rather than a parent.

OP, I understand your anxiety. My own worries about children were based on the emotional turbulence of the family I grew up in - we all had issues to resolve, resulting in endless friction. I didn't trust myself not to replicate similar disarray in my own children, such as by over-compensating. It took me half a century to establish a loving and mutually respectful relationship with my parents; I'm just lucky they lived long enough for us all to benefit.

As PPs have said, perhaps consider whether this is health anxiety and weigh up the actual estimated risks before deciding on anything.

Not sure why some PPs insist on being offended by your even exploring this question. It's no more insulting than saying "My brother is delighted that his oldest child is now a world-class tennis player, but I wouldn't want that life - his wife spent every summer ferrying them around the M25 for lessons and tournaments."

Me too! The amount of children with additional needs seems to be on the rise and rise so the statistical odds arent exactly stacked in my favour. I won't take the risk.

Sounds brutal and I really dont mean to offend but it's how I feel. I completely understand where you're coming from OP.

The parents who have this experience as their reality I think are formidable people and their children are very lucky to have them. I wouldn't make a very good job of it and I could see myself so unhappy.

No one is talking about your child. OP is not saying this to her cousin. You don’t have to be on this thread at all if it’s triggering.

This. I have a DS with ADHD and while he's not severely disabled by it compared to others, if he chose not to have kids in case they had it too, I would not blame him in the least. He's lived it and had a tough time due to his condition

Sorry, just read my comment back and it seems a bit abrupt. Not meant that way, my apologies. I think maybe you’ve hit the nail on the head - with this level of anxiety maybe having children isn’t the right thing to do.

I feel the same. I’m currently about to pop with number 2 (already have DS who has no additional needs that we know of) and although I’m super excited to meet her, I am also slightly anxious in case anything is or goes wrong.

I don’t know why it’s taboo to admit you don’t want a disabled child - it’s not something many people would actively choose, after all! And parenting is hard enough anyway without throwing additional needs into the mix.

That is not what she said. She said she had a great admiration for people coping with the cards dealt - she just doesn't think she would cope.

OP - have you discussed this with you DJ? Does he know how you feel?

See my dd saya this, she is pda. Poor girl struggles with basic things. Its very sad and its life limiting.

If you are serious about minimising the chances (you cannot eliminate them) then check out the genetics of your own family and the person you are procreating with, crack on and complete your family earlier in life (under 35) and don’t smoke, drink or use any substances in pregnancy. Obviously none of these would eliminate the risk but on a population level they are risk factors. When you have a child you love them unconditionally whatever may happen and you have to go into it with that mindset.