Scared to have children in case they have additional needs

Sounds like you’ve cracked it! You might want to tell Simon Baron-Cohen he can give up his life’s work now.

I have spina bifida. I have no wish to diminish your DD’s experience but at the same time I have to ask why is it life limiting ? I had to have a termination because tests showed that my child had the same condition - a certain percentage is hereditary and can be life limiting. PDA is not a life limiting condition.

If you had the choice, though, would you really want to raise a severely disabled child? Really and honestly?

I don't doubt you love your child massively but that's very different to someone saying "actually, I don't want that". It's not a personal attack against you or your situation.

I think it’s a normal thing to worry about. I know I personally had the same thoughts. You have thoughts of having children and everyone imagines school, uni, marriages, grandchildren. No one imagines having a child with a disability.
that being said, you have children and you love them so much I do think you cope with your normal, whatever that would be. Most people don’t have children with disabilities , don’t let fear stop you. We are blessed with children without disabilities and it’s the most wonderful thing.

I’m not in your life so I’m not going to pretend I understand how you feel and I’m genuinely sorry that this is a difficult thread to read.

But, this is also the argument used by those campaigning against screening and termination for conditions like DS. I hear the arguments about what it means for people with DS and their families but the harsh reality is this can’t be used to shut down discussions and limit others’ choices on their pregnancies and their families.

I know the two situations are very different but the arguments are often the same.

I think you should read @IncompleteSenten 's post about her life with her DS before you post things like "there's no joy comparable" and "worry is part of the deal".

Well some people would still have them, the ones that feel they could cope. But it’s a good thing if the people who don’t think they could cope don’t have children because that’s not fair on anyone. People get joy from different things and for some people, children do not bring them joy. Do you really not understand that people are different in what they want from life and what they find joy in?

I think you're really brave and honest to post this. I'm sorry things are such a struggle for you and your DS.

But you have said it multiple times!

Respectfully, it's not about you. The OP is discussing her feelings.

Absolutely nothing to do with you.

I love my children but having a SEN child has took almost 100% of my life, and impacted my health significantly. It's been one long fight with everyone - my child will be independent, go to university and has achieved what everyone said he couldn't but for the past 11 years years its been me against Dr's, Schools, Surrey CC, other parents and family judging, etc. Even going against my own Husband as I knew our child better than he did and needed to advocate a different pathway.

I think you are right OP to consider whether you could cope - I would say I'm unusual as can operate on very little sleep, adrenaline highs and because of my job have no nerves / fine confronting professionals if I disagree with their plans or opinion of my son. I have fought and won appeals on school placements, ECHP's, etc and it has a high cost to the parents mentally and physically. Let alone the day to day care of a SEN child.

In my opinion you are an excellent potential parent as you are considering the whole picture. Would I do it all over again in the same scenario, probably not but mainly because of what my child has faced and will face.

This is so true. If everyone worried about relatives genetics & possibly having children with similar traits whether mild or severe nobody would ever have them. Every day is a risk with children even just keeping them alive. There is no other joy comparable & worry is part of the deal 🤗

I have a 26 year old son who defecates and urinates onto his bedroom floor. Who is violent and makes sexual threats. Who has given me a concussion. Who no respite company will accommodate. Who needs 2 strong adults to restrain him. Who will likely end up in a secure unit drugged to fuck after I am dead.

I wish to god he was different. I wish he could live a full life and be happy. I wish he didn't have to go through everything he goes through. If there was any way at all he could be different I would leap at it.

Imo no parent should ever want this life for their child or take offence at others saying they wouldn't want that life for their child.

I mean there are people choosing to be childfree because they hate the thought of having any child, and as a mother I don’t find that at all offensive.

I’m also not offended by anyone who hates the thought of doing my job, having my disability, or doing the hobbies that I choose to do.

You’re projecting, sorry. You can’t mandate that people can’t discuss worrying about having disabled children because it’s offensive to you.

I understand. My friend's child is profoundly affected by autism
It's a struggle every day 24/7. Her adult daughter needs 2:1 care is non verbal, will never work, have friends or relationships, she will always live in residential care until she dies.

It's a world away from the vast number of people who mask and function very well with their version of 'autism' talking, working, relationships and even children of their own. Her life is immensely tough.

You might have a child with no disability or a milder show of autism.

But that child does exist, all over the place - my child, and other children, and people on this thread are saying ‘god I hope my child is not like that one’. That’s the issue that you don’t seem to understand

I’ve watched parent after parent brought to their knees by trying to care for and advocate for their children.

There’s a huge amount wrong with our society that makes life even harder. NHS funding, education, social care all need to massively improve. But even with everything needed in place it’s still an impossibly hard life for lots of families.

And as often is the case it’s women who are taking on the majority of the care. I’ve seen mothers feeling suicidal because they can’t cope, don’t get a break, don’t ever get enough sleep, are providing personal care for children who have grown much bigger and stronger than them. They might be facing daily violence from dysregulated children whose needs are not being met in their school places etc They often can’t take a break because there’s no-one else. They might have funding for a package of care but can’t find the experienced staff to provide the care. Need respite but can’t get the funding agreed.

We’re failing children, adults and their families. But people don’t want to pay enough tax and NI to properly manage and fund public services. They don’t want to pay care staff enough that they can afford to live to a decent standard and to be thoroughly trained and continuously unskilled. Instead the people needed to provide outstanding, compassionate and respectful care are paid a fucking pittance and treated like shit.

They don't want to fund a benefits system that even hints at someone having a decent standard of living. How fucking dare they eh?! Grifters and chancers is what they’re called.

It’s relentless and honestly I’m not cut out for it. I know myself and I know what I can handle.

Maybe in a fully funded; functioning and supportive society it might be different. Instead, I’ll keep fighting for those who need me to.

I’m so sorry that people haven’t been kind about your choices. Your body, your choice, and I say that as an autistic mum of two who went the other direction.

I have two children. I was pretty carefree when I had the first and then suddenly was hit with anxiety especially over illness. I decided to have another. The eldest is happy and healthy and the younger one is too young to tell but so far is a joy. I love being a mum and I love my life. However, when I think too much I am filled with anxiety that there will be something wrong with them. Not necessarily autism but we have a car accident, or a sudden incurable illness or for some reason they cut contact with me. Anxiety is the fear of the what ifs and I feel like I spent the majority of my first child’s life being stuck in the what ifs and im really trying to embrace and love every moment now.
it’s a gamble and a roll of the dice for sure. Some families may be make susceptible to some things. However, I think it’s important to understand and seek help about real fears and anxiety creeping in too much. Anything can happen to any of us at any time. Is it worth never doing anything because of that fear? Only you can really tell. But I would think about addressing this before having children as this could make your fears worse

People don't know what they can cope with until it happens. Life will throw up the unexpected with our without children.

I know how this is going to sound but my biggest fear was that my children would be non verbal and autistic. It’s the lack of connection and violence that I worried about - with physical disability it’s not ‘part of the person’ in the same way, you can still truly get to know them and connect on a level that you are both on. Equally I know a delightful little boy with Down Syndrome who is verbal, toilet trained and a really nice little character, and I didn’t worry about that either. I’ve read so many threads by desperate parents whose houses are trashed, who are regularly attacked, who have to clean poo off walls and they have no support. I just knew I wouldn’t be able to cope with that.

When I was 31, if someone would’ve told me I would have an autistic child I think I would have decided against it too. But then I would’ve missed the opportunity of knowing, of loving, of raising the most incredible little girl who has made my life better without question.

I’m not saying you should have kids. I’m just saying that for the vast majority of parents (thank god), they love their kids whatever happens, even if you can’t see that now. However, of course if you feel adamant that you wouldn’t be that way, then absolutely do not roll the dice. Because even if you have a child born without a disability, there’s no promise they will remain that way for the rest of their life, there’s no promise of that for any of us.

I think really think of it all through is a far better option than leaping in feet first. OP’s husband might well be everyone’s favourite uncle but that is very different from being a parent.
Having a child with additional needs can put a massive strain on a relationship and the OP really needs to consider that if their child is born with severe needs, how would she feel being a single parent?

I am child free and this is one of the reasons. I grew up with family members with severe disabilities and I’ve seen how hard it can be for parents. The worry about what will happen to your child after you have gone is awful.

Good luck OP with whatever you decide.

Jesus Christ

all I can say is if that happened then the child would be lucky to get away from a horrible mother like your self and with a family who wanted and loved them

my niece has down Syndrome and she is a delightful pretty adventurous little girl and a joy

thank God her parents didn’t think like you

ive been on mn for over 20yrs and honestly dont think i have read such a disgusting comment as your reply !

Well, sounds like it's time to discuss it then.

Even if you adopt a child, that's far from risk free. You could adopt a child who appears to have no additional needs, but they could have SEN that becomes apparent later on or become disabled through illness or traumatic injury.

If you know you're only up for parenting a healthy child with no disabilities or additional needs then the harsh reality is you really shouldn't have children. Because any child could potentially become disabled at any time and once they're here you can't just give them back! Surely you must know that deep down. It sounds like you do, you just don't want to have the conversation with your DH.

But this isn’t about you and your child. It’s about OP and a hypothetical that doesn’t exist. I know people with profoundly autistic children and their lives are incredibly hard - their children don’t sleep, are very physically abusive to them, destroy the house etc - who wouldn’t find that to have a very detrimental impact on their quality of life?