Terrified to roll the dice

[beccagalli]

DH and I are thinking about whether or not we want a child. There's a lot of reasons we go back and forth, but what I am really stuck on is the fear of the unknown. I have convinced myself that we will have a child with SEN or a disability and while I know that wouldn't affect how much we loved them or their value in the world, it would make life so much harder and I don't know if I could cope with the anxiety and upset that comes with that. If other children were unkind to them or I could see them suffering I know it would break my heart.

The reasons I've convinced myself we wouldn't have a healthy & neurotypical child relate to a few things. Firstly we both work in a hospital so we see the worst case scenario all the time, I am not clinical but I do have interactions with patients. I sometimes work with NICU and PICU so obviously there's that, but also things like elderly parents still accompanying their adult child to hospital appointments, who is scared and distressed because they don't understand what's going on. Also in terms of genetics, my DH has bipolar and my sister, niece and two cousins are autistic. I also suspect my DF is on the spectrum but he has no diagnosis. My niece struggles with everyday life and is unlikely to ever be fully independent, and I have seen what a nightmare my DSis and BIL have had navigating access to SEN education and trying to get support in place. I love being her auntie but I feel pain when I hear about her struggles, so I can't imagine how much worse that is for her parents. We're also both older, I'm 34 and DH is 45, which I know can increase the risk of some conditions.

I genuinely don't know if I am being unreasonable or if the odds are stacked against us on this. I know there are no guarantees but I can't get past the sense that it's inevitable we would have a child with additional needs, and I wonder if I'd cope?

[Wayk]

@beccagalli

DH and I are thinking about whether or not we want a child. There's a lot of reasons we go back and forth, but what I am really stuck on is the fear of the unknown. I have convinced myself that we will have a child with SEN or a disability and while I know that wouldn't affect how much we loved them or their value in the world, it would make life so much harder and I don't know if I could cope with the anxiety and upset that comes with that. If other children were unkind to them or I could see them suffering I know it would break my heart.

The reasons I've convinced myself we wouldn't have a healthy & neurotypical child relate to a few things. Firstly we both work in a hospital so we see the worst case scenario all the time, I am not clinical but I do have interactions with patients. I sometimes work with NICU and PICU so obviously there's that, but also things like elderly parents still accompanying their adult child to hospital appointments, who is scared and distressed because they don't understand what's going on. Also in terms of genetics, my DH has bipolar and my sister, niece and two cousins are autistic. I also suspect my DF is on the spectrum but he has no diagnosis. My niece struggles with everyday life and is unlikely to ever be fully independent, and I have seen what a nightmare my DSis and BIL have had navigating access to SEN education and trying to get support in place. I love being her auntie but I feel pain when I hear about her struggles, so I can't imagine how much worse that is for her parents. We're also both older, I'm 34 and DH is 45, which I know can increase the risk of some conditions.

I genuinely don't know if I am being unreasonable or if the odds are stacked against us on this. I know there are no guarantees but I can't get past the sense that it's inevitable we would have a child with additional needs, and I wonder if I'd cope?

I am the same as you. I decided against having a child and I am very happy with my decision. But not everyone is the same. Would you explore other options like donor or adoption? Maybe do some research on having a biological child. It is a big decision and one you need to be 💯 happy with. Best wishes.

[beccagalli]

Thank you for your kind reply. I haven't really thought about other options. It all feels a bit overwhelming. I'd like to do some reading around genetics but I don't know where to start.

[ShrubRose]

It's a very big decision, of course, and you are very wise to consider it very carefully.
Imo, the best way to go would be to seek out professional genetic counselling. It doesn't sound as if you would be eligible for NHS genetic testing but there are private services offering genetic consultations.

[beccagalli]

@ShrubRose

It's a very big decision, of course, and you are very wise to consider it very carefully.
Imo, the best way to go would be to seek out professional genetic counselling. It doesn't sound as if you would be eligible for NHS genetic testing but there are private services offering genetic consultations.

Thank you. I've just been having a look, it sounds like there is still a lot of research to be done around autism and the genetics though, so I'm not sure how much it would put my mind at rest. Poor mental health could take years to detect too.

I probably sound like an awful person. I feel so guilty for worrying about this because I know I would still love and care for them no matter what.

[GoodnightAdeline]

Is this, in essence, a fear of autism or do you worry about disability as a whole?

[meganorks]

To be honest, if you are in anyway doubtful you should have a child, you probably shouldn't. No one is going to be put your mind at rest. And if you are generally an anxious person, you are likely to pass that on to your children.

[Marghogeth]

OP, you could have a perfectly healthy baby who later has a terrible accident and needs lifelong care. That's life. We play the hand we're dealt.

[beccagalli]

@GoodnightAdeline

Is this, in essence, a fear of autism or do you worry about disability as a whole?

Disability as a whole but I suppose autism is the one that seems high risk because it appears to run in my family, including quite a severe case.

[GoodnightAdeline]

@meganorks

To be honest, if you are in anyway doubtful you should have a child, you probably shouldn't. No one is going to be put your mind at rest. And if you are generally an anxious person, you are likely to pass that on to your children.

I think this is a really disingenuous comment. It isn’t ‘anxious’ to worry about having to care for somebody for the rest of your life, or spending the rest of your life having to guide and parent somebody who can’t cope in the world.

Nor is it an unfound fear because almost every other child on here seems to have autism, ADHD, debilitating anxiety or some kind of other condition which makes parenting them very hard. And it isn’t a self selecting sample - I could click on a thread about virtually anything and this seems to be the case.

I had the same worries OP. I’ll send you a PM.

[kawabungah]

Honestly, OP, I tell you this from a place of kindness and ‘being there’ right now. I currently have a 3 year old who is non-verbal, high needs, etc. can’t talk, no understanding, I’m their full time carer.

whilst I get the notion of “I wouldn’t change them for the world! Autism is their super power!” Etc that’s not how I feel right now.

my life is taken up caring for my child, day and night. I’m essentially a carer over being a mother. It’s relentless. We have just got an autism diagnosis but very little practical help. Every day I’m in fight or flight, getting attacked, constant battles etc. I adore my child, I really do, but if I could have seen my reality before I got pregnant I would not have chose this life.

[kawabungah]

Also, I wish I had thought about it from the perspective you are. I take my hat off to you and I respect that you’ve really thought about this, I wish I had done the same

[meganorks]

If every other child does indeed have a condition that she is worried about, then surely the answer is the same - don't have a child.

I'm not saying it isn't a valid worry, but there is literally nothing that can be said or done to ensure she doesn't have a child with any SEN or disability. And if she goes ahead and has a child who does require a lot of additional care, she will no doubt be playing over her decision for a long time.

[Saschka]

The vast majority of children do not have SEN. Of those children who do have SEN, the vast majority live independent lives as adults. So in that sense the odds are not stacked against you, they are very much stacked in your favour.

[Hermittrismegistus]

I probably sound like an awful person. I feel so guilty for worrying about this because I know I would still love and care for them no matter what

I don't think you sound awful at all.

I've seen many families fall apart when they have a child with high care needs. Parents (mostly mothers) driven to despair and suicide attempts due to the relentlessness of the care and lack of help available.

It's very sensible to think carefully about the what ifs, especially if you have a high rate of disabilities in your family.

[LifeExperience]

Both autism and bipolar have genetic components so you are wise to consider parenthood carefully. If you strongly desire to have biological children you should probably see a genetics counselor.

[CrappyBarbara]

Certainly the odds are not “stacked against you.” For all of the disability, autism, and severe mental health issues we hear about, the vast majority of people are neurotypical, even in extended families like yours. But nobody is ever going to be able to give you total reassurance because it doesn’t exist. Having a child is rolling the dice regardless of your family background. And parenting can be incredibly difficult for a million reasons you haven’t even considered. Kids that are mentally healthy and neurotypical are not immune from illness, accidents, social and emotional difficulties, and general bad luck. All kids break their parents’ hearts sometimes, in a million different ways. If you’re not up for that you should not do it. On the other hand… IF your life is fairly stable and you want children and you are ready to be a parent then having a child is the most amazing, rewarding, life-affirming, fun, eye-opening experience you will ever have. It’s impossible to explain to someone who hasn’t been through it but there’s a reason they call it a miracle.

[TheMostly]

I think I vastly underestimated my own lack of resilience when deciding to have a child. My mental health was too fragile and I was far too certain of my decision- I had no doubts at all. Self-doubt is probably a good characteristic in this instance. I wish I’d known then how deranged I was and how I would not hold up mentally the way I would need to for myself and for my family.

Ignorance wasn’t bliss in my circumstance

[kawabungah]

I feel you @TheMostly
sending love x

[gamerchick]

It wasn't until I had my 3 that I realised that autism and ADHD run in my family. If I could go back I wouldn't have had any. As much as I love them, this is life until I kick the bucket myself.

Throw bi polar into it then no I wouldn't risk it.

Sorry man, it has to be something you decide on your own.

[beccagalli]

@GoodnightAdeline

I think this is a really disingenuous comment. It isn’t ‘anxious’ to worry about having to care for somebody for the rest of your life, or spending the rest of your life having to guide and parent somebody who can’t cope in the world.

Nor is it an unfound fear because almost every other child on here seems to have autism, ADHD, debilitating anxiety or some kind of other condition which makes parenting them very hard. And it isn’t a self selecting sample - I could click on a thread about virtually anything and this seems to be the case.

I had the same worries OP. I’ll send you a PM.

Thank you, I'd appreciate that.

[beccagalli]

@kawabungah

Honestly, OP, I tell you this from a place of kindness and ‘being there’ right now. I currently have a 3 year old who is non-verbal, high needs, etc. can’t talk, no understanding, I’m their full time carer.

whilst I get the notion of “I wouldn’t change them for the world! Autism is their super power!” Etc that’s not how I feel right now.

my life is taken up caring for my child, day and night. I’m essentially a carer over being a mother. It’s relentless. We have just got an autism diagnosis but very little practical help. Every day I’m in fight or flight, getting attacked, constant battles etc. I adore my child, I really do, but if I could have seen my reality before I got pregnant I would not have chose this life.

💐

Thank you for sharing. I hope you have some support.

[beccagalli]

@TheMostly

I think I vastly underestimated my own lack of resilience when deciding to have a child. My mental health was too fragile and I was far too certain of my decision- I had no doubts at all. Self-doubt is probably a good characteristic in this instance. I wish I’d known then how deranged I was and how I would not hold up mentally the way I would need to for myself and for my family.

Ignorance wasn’t bliss in my circumstance

I'm so sorry you feel that way 💐

[beccagalli]

@gamerchick

It wasn't until I had my 3 that I realised that autism and ADHD run in my family. If I could go back I wouldn't have had any. As much as I love them, this is life until I kick the bucket myself.

Throw bi polar into it then no I wouldn't risk it.

Sorry man, it has to be something you decide on your own.

Thank you for sharing that. My DH having bipolar does worry me too - he's just changed jobs to leave shift work and have more of a routine because his doctor recommended it, a child would blow all that up, even if they were an easy and healthy baby.

[Underscored]

OP lots of things can happen in life that we don't forsee. You are fixating on this particular way in which yours might go wrong. But you could be hit by a bus tomorrow. Or be diagnosed with a serious disease. Or your partner could. Or any number of other disasters. That's the risk of life. To me this is a bit like deciding never to go on holiday again in case the plane crashes. The fact is it's not likely you will have a child with the most serious needs. It's not very logical to me that you would decide not to have a child just in case you are faced with the absolute worst case scenario.

[overthinkersanonnymus]

I have the same fears too op, and I started a thread, under another name, on it a while back.

I was basically told by other women on here, that I was disgusting to even consider not wanting a potential child to have disabilities. I didn't deserve the chance to be a mother because I don't see autism as a "super power". And my favourite, I was mentally ill because I dared to consider the impact an autistic/disabled child might impact me.

Oh, they also said that I was offensive and ableist by even having this worry and if I couldn't cope with a disabled child, I shouldn't even think about having a baby.

I didn't see any of these women rushing over to the SEN boards though, with their enlightened attitude, telling those mothers to basically "shut up moaning" or " how dare you have the Gaul to be devastated by what's happening to your family, any child is a gift" etc.....