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.

This post is so beautifully written and full of truth and common sense.
Nothing in this life is guaranteed.

Any form of contamination in formula is not acceptable. If you Google can breast milk ever be contaminated & although rare the answer is yes & more so with stored breast milk. It's undeniable breast is best but for those mothers who can't breast feed they rely on formula & contamination is an extremely rare occurrence. If in doubt they should speak to their health visitor who will have all the latest facts.

The basic answer is you never know what kind of child you'll have. It's a lottery and what you view from the outside isn't the whole picture. No child is perfect and anything can happen and change as they grow. You've been honest with yourself and this is a conversation you need to have with your husband.

Just returning to this thread to illustrate my point. I've just ushered DC1 out of the kitchen (it's 3:02 am) as, consistent with diagnosis, they have struggled terribly with sleep since infancy, and, consistent with diagnosis, they think nothing of coming downstairs while the rest of the house sleeps, to throw together (noisily) a Scooby-snack and accidentally waking everyone up. I'm still awake to avert disaster though as, having spent the evening trying to coach them through some school work, resulting in them becoming distraught, weeping heartbreakingly that they hate their disability and wishes they weren't alive, I have decided to wind down, writing follow-up emails to Post-16 education providers and college SENDCos. Nobody helps you with this, or shows you what to do.
Our lives on hard mode. On repeat.

You don't really opt for residential care. You get to breaking point and say "I can't do this any more", because you can't.

You have to allow your relationship to be so terrible with your child that you feel that way.

Once you're done, there's no magic place for them to live. The child will get shuttled around some temporary children's homes until a place at one best suited to their needs becomes available. This can take months.

And you're the one putting your child through that.

I thought one of the last mums in that documentary made an interesting point in that she was asking for support for years, and told there was no funding for it. As soon as she was done, and her child lived in residential care, £20k a week was spent to care for him. She asked why she didn't have access to a fraction of that money in order to support his ongoing care at home.

As a society, we need to spend more on preventative measures, as they are often cheaper than the "cure". But we don't.

Look at the NHS, Education... Two great examples of where early investment would cost less money than trying to fix things.

"I get it OP. I have kids, and this was something I was so scared of when pregnant. I knew if they’d been born with something immediately clear like Downs Syndrome, I’d have to give them up which would be incredibly painful after growing and giving birth to a little human. I’d be mourning the baby I thought I’d have."

The reality is you probably wouldn't have given them up at birth because very few people do.

I had my four children fairly young. I was oblivious to autism and other special needs, except perhaps Downs. Mine were healthy and behaved well, I never had any parenting issues.

Then I started working in childcare and with children with autism, global delay, behaviour issues, FAS and it really opened my eyes as to what some parents lives could be on top of the usual chaos of parenting typical children. I’m too old but if I’d been in my job prior to having children I might have had a pause to consider carefully what I was capable of dealing with.

On the other hand, what I’ve also learned from being a parent is just just grow with your child. You manage each stage and the issues of that stage as they occur it’s impossible to look too far ahead. When I held my babies I couldn’t see the adults they’ve become now because it was a stage I needed to grow to as well.

@LeafyMcLeafFace I don't feel offended about it. Why would anyone want a child that has a disability? Obviously once they are born you can't do anything about it but I don't see the issue with trying to avoid a child with autism. I currently wish my three year old would start talking more, stop destroying my house (he has ripped the kitchen cupboard doors off) and start potty training in time for school.

This.

Massive support for sharing this.

You sound strangely obsessed with shunning formula. Coming on a thread with absolutely no relevance starting a breast vs formula bunfight with your 'letdown' username. Perhaps concentrate on working out why that is, instead of shaming other mums on the method they feed their baby on a completely irrelevant thread.

it might also help you to educate yourself on the regulations of formula and the fact stored breast milk can also be harmful. Formula and breast milk being contaminated and causing babies harm is vanishingly rare. Breast milk is tailored to the baby, formula isn't. Breastfeeding is the ideal method but it doesn't always work and that is okay. Both feeding methods have caused billions of babies to thrive. If you're that arsed about formula harming babies id also expect you to never give your children sugar, any type of remotely processed foods, any red meat, don't let them go outside in polluted areas and live in the arse end of nowhere.

anyway.. back to the original thread as you were.

I have 2 dcs, one who is neurodivergent and one who is neurotypical. Life for the latter has been very much easier - they are popular and capable and parenting has been far lighter touch.

i think this post is an honest reflection of how a lot of people feel. There is just not enough support for parents of dcs with additional needs and life is likely to be challenging. There is nothing wrong with recognising this and opting not to take the risk.

this all said, I do think that parenting ds has made me a far better human. I’m calmer, more thoughtful and aware and far less selfish because of having to consider his needs in everything I’ve done. I’d want his life to have been slightly easier but it’s done me no harm long term to understand the perspectives of others. It’s also led me into a career where these skills have been essential.

The post is about children with additional needs. I grew up as a glass child after my brother was left severely disabled after contracting menigitis at 4 weeks old likely caused by bacteria in formula powder. I think that is perfectly relevant to the post.

Well I’m sure you can see that it makes sense to though. Otherwise you’re just making your life harder, by choice.

Whatever you are googling needs to learn the difference between an infection and sepsis. Sepsis isn't an infection, it's a reaction to an infection.

Sepsis in newborns, or neonatal sepsis, is a serious medical condition that occurs when a baby has a life-threatening response to an infection. Bacterial infections are the most common cause of neonatal sepsis. Bacteria in formula can cause infections that lead to neonatal sepsis.

Can you stop derailing with your obsession and maybe start a new thread?

Ta

Oh my god, shut up about formula and start your own thread!

Just stop, will you? What are you trying to achieve?

Why is this derail allowed to run @MNHQ?

Any infection can cause sepsis.

My son almost died from septic shock when he was 8. It's the reason he is now disabled.

Funnily enough, he wasn't drinking baby formula at 8.

I realise it’s analogous, it’s just quite an offensive short hand. It’s also grossly stereotypical. Disability isn’t just sippy cups and grey filters and sad faces.

Sorry to hear this although 'likely' is the operative word. Of course it could have been the cause which is dreadful along with including many other reasons if cause was not proven

I have 4 kids, three have SEN. I thought my 2nd born wasn't developing normally, but everyone, everyone poo pood my concerns. He is a boy, he is lazy, his big brother talks for him etc. By the
Time he got diagnosed, the next two were already here. It's my third child who has severe needs. I was given some critical information I could have done with when worried about child two when he was aged two by the time child 3 was born and I was 35 weeks pg with child 4.

The speed of diagnosis doesn't help when having subsequent children. Ironically, my son, who didn't talk until age 7, passed his three years ( or is two?) health visitor check. I pointed out that he didn't say a word to her. She said his speech was fine!

So I had 3 children and was 35 weeks pregnant with three NT kids. The next day I visited the hospital and was told two wasn't NT and the third might not be. There was no choice to go on and have more sen kids..I was a over worried hysterical mum of neurotypical kids. Until I was proved my concerns was valid.

As do I and others. It can be seen as offensive to lump all types of disabilities together and claim they’re all devastating 👍

And you've come to that conclusion because he was fed on formula? Have you considered other methods of contracting meningitis or sepsis? Probably not if you are a formula shaming person. You want formula to be the answer.

honestly, start your own thread. Stop obsessing over how other mothers feed their babies. You've taken a very loose link and ran with it. It doesn't mean the link is causation or even correlation.

if formula caused meningitis in young babies it would be banned.