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?

I'm so sorry those are the responses you got. I've definitely got a voice in my head saying all those nasty things to me too for questioning it, but I know it's not about ableism or any kind of prejudice. I've just seen how hard it is and I am afraid. Feel free to PM me if you want to chat with someone going through the same worries.

Not at all. You're being careful and trying to get information that will help you make the best decision for you and DH.

I think you are being very sensible in asking yourself these questions.

We asked ourselves the same with ds2 (ds1 was a surprise, we were supposed to be infertile!). Our conclusion was that yes, we were willing to risk the odds as we felt that the benefit to us and ds1 of another child was greater than the risk of harm from them having a disability, and that if they did have a disability we would be able to cope, and ds1 would benefit whether they had additional needs or not.

But we decided not to try for a third because in that case we decided the balance of risks was wrong for us, as although another child would have been lovely, the risk of not being able to cope with 3 if one of them had severe additional needs outweighed the benefit.

It wasn't that we thought we wouldn't love a child with additional needs or anything like that, which is a ridiculous thing to imply, because of course all parents love their children. It was simply a consideration about whether we felt that the love for a child that did not yet exist outweighed the risk to our current lovely setup, which it did not.

I have 2 boys with adhd and asd. While I wouldn’t change them for the world raising them has been extraordinary hard. Constantly fighting for the education they need, supporting them through failed school and college placements has been hell. Insisting my child came with me on the school run to pick up his brother because I couldn’t trust him not to harm himself.

I get it, once you have kids, you’re always a parent but I expected my kids to go to university, get jobs and become independent. I get it, you’ll always worry about your kids safety and happiness but this is just too extreme.

we’re lucky, our marriage is intact and the boys are relatively high functioning but I don’t see a time when I’m going to
be enjoying my retirement and “chillaxing”

Honestly the romanticising of children with special needs pisses me off. Bringing them up is a very brutal, extreme sport.

Everyone has been really kind, thank you. I have a lot to think about, but my instinct is to remain childless. I have a good life already. DH doesn't seem that fussed either way.

It's really hard and I'm sorry you are going through this. I couldn't have children so we've adopted. Please don't think that you will have a child without issues if you choose that path because most come with a lot going on. Our DD (who we love more than anything) has trauma and ADHD, possible autism and other difficulties. We have had to advocate and fight for her every step of the way. That said, I suspect if it had happened naturally for us we'd have had similar. And I have other friends with adopted children who have similar, or worse issues. It's not for the feint hearted.

So I think the question is, do you want a child you'll need to use every atom of your being to fight for. Nothing is guaranteed.

Thank you. I completely agree with you. I think people who adopt are incredible but I don't think me or my DH would be suitable.

I really understand and relate to everything you say OP. I would like a child but I know I couldn't cope with additional needs. I also have a very small family so I would not have an extended support network either. I think you are very sensible and doing the right thing in giving this so much thought and consideration. If you'd like to chat please feel free to DM me.

Do not overthink it! I love having kids, but if We had not have had kids I’m sure we would be equally happy…

I think this post is really brave, and so are some of the replies. ❤️ My DP and I have a 20 year age gap between us. I was so worried about him being an older dad and the nebulous arena of "sperm quality" and my own family has a lineage of varying degrees of autism. It really worried me for all of the reasons you state and I also felt the extra pressure of my DPs age and the worry of keeping myself alive and healthy to care for a potentially vulnerable adult. But I wanted a baby so I rolled the dice. Our DD is a happy, healthy little girl. I am so grateful for her and for her good fortune in life so far, but she will be an only child because of those health related risk factors. You are being sensible and cautious to consider this and whatever you decide, I wish you luck and happiness.

But here's the thing: life is full of uncertainties, and there are no guarantees no matter how much we plan or worry.

Well, if you don't have a child at all, then you are guaranteed to not have a child with additional needs. This is the certainty that OP is wondering whether to "gamble away", as it were.

The thing is, no-one can put a number on the risk you are considering. It's somewhere between "unlikely" and "possible", which doesn't help when you are as considered as OP seems to be.

I'd be more inclined not to because your partner isn't bothered. Even with healthy happy kids, you need to both really want them because they are so much work. It's relentless when they are little. But lots of fun too.

I think you are being very balanced and wise to think about this. I am now beyond child-bearing age and would have very much loved a couple of children but for a number of reasons it never happened.
However bringing up any child is a lot of work and commitment and it’s not for everyone and every couple, especially with the family factors you mention, particularly your DH’s need for routine and regularity. There are a lot of children in the world, including the UK, who are being brought up in less than ideal circumstances so I think you shouldn’t feel railroaded into doing something that may not be right for all of you, including the child.

That's a tough call. Both bipolar disorder and autism run in my family, as I now know but didn't when my oldest was born.

How stable/how responsive to treatment is your DH's bipolar? Could disruption and emotional overload see him sectioned (not an exaggeration, an actual occurrence in my family)?

I think it is really important (in fact more important) to consider the life your child would have should they have disabilities. Obviously it could be devastating to your own life, but even more so to theirs.

I do understand.

Before getting pregnant with mine, I worked in an autism unit attached to a mainstream school. The children were lovely, but they were very hard work and their lives were so impaired. Most of them would likely have needed 24 hour care for the rest of their lives.
I was absolutely dreading that for my children, but had to tell myself how unlikely it was. I think you fixate on what you see a lot of, regardless of how prevalent in society it actually is, and you think it's more common than it is.

As it happens, I DID end up with 2 perfectly "normal" children. :)

I think it is sensible to consider this OP.
There isn't one right answer but if you aren't really sure that you want to be a mum I might go for no dc.
Any dc, SEN or not is highly disruptive and can put stresses on the best relationships in unexpected ways.

I never once considered not having a child, but I was very anxious throughout my entire pregnancy with DS1, convinced he would be still born or something would happen. Then when he was born I was convinced he had some SEN, autistic etc.

He’s now 9 years old and it became clear when he was about 3 that he’s neurodivergent, but I think I genuinely knew from very early on. I think the true reason for this obsession is that I’m ND myself and so much more likely to hyperfocus/obsess about it, perhaps felt different myself growing up so projected a lot of that.

My point is that with your family history, there is a good chance your child might be born with SEN, and there’s a good chance you are ND yourself. I don’t think it’s typical to obsess and worry this way. The question you need to ask yourself ultimately is how much you want a child.

If considering pregnancy Id maybe explore the MTHFR gene testing, about £140 and look at methylation/folic acid if its an issue.

It's not fully understood but lots of links between MTHFR and autism/ADHD

I felt similar to you op, ADHD runs in my family, and myself and DP are older than ideal. But I knew I couldn’t not have at least one- and I’m pregnant at the moment. I share your fears though; I’ve worked in special needs with children with some of the most disabled children and I hate it when I hear the line trotted out that ‘autism is a super power’ or ‘they’re such loving children’ about those with DS. While those elements can be true, for many parents the reality is completely polar opposite from that.

I live in hope for a healthy happy child, however that manifests- and will never take the neurotypical/health/happiness for granted.

As a counter argument to the depressing reality provoking posts earlier, my DH also has ADHD, I think I probably do too along with dyspraxia, as does eldest DS1 (DS2 likely neurodivergent but different kettle of fish to DS1 so harder to pin down!).

We have a very happy family life. My DS1 can be extremely hard work sometimes, but he doesn’t have meltdowns, he’s not destructive, or dangerous. He’s basically just been a teenager since turning 3 and can be oppositional and argumentative. He also can be extremely affectionate, kind and thoughtful. And he is hilarious.

My DH has had and continues to have a very happy life. He has had problems with money management and debt in the past, which I put down to part ADHD/impulse control and part upbringing as his family are similar and he’s never been taught to manage money so only learned the hard way as a young adult.

We bicker a lot and I find my DH hard work sometimes with RSD making him over sensitive, but we are very happy. We go on holidays, the DC are happy in school and the millions of after school activities they do, we go on days out with friends, they have play dates, we have date nights out and nights away when grandparents are happy to babysit. DH and I both have well paid and flexible jobs.

Basically, our life is as “normal” as you can imagine. We are probably louder and more chaotic than some families but I do think our life is wonderful. Looking around, so many members of our family are ND, all high functioning, working, happy.

Caveat with neither DH nor I have serious mental health problems despite the neurodivergence.

You mentioned your DH being advised about sleep and avoiding shifts/night work - very good advice for someone with bipolar disorder.

And also worth taking into account - if you did have a baby, would all the night work fall to you because of your husband needing to avoid sleep disturbance because of his bipolar diagnosis?