Worries about having a child with disabilities

[worrywilma]

I'm fully prepared to get my arse handed to me on this thread, but I need to know if this is a common place worry or not. If not then I obviously have to reconsider TTC at all.

I have major worries over having a child with a disability, specifically autism.

I don't have any family members with autism but a couple of my friend's children are on the spectrum, some quite severe, and their lives are so full of stress, worry and fear. They all said if they could turn back the clock, they wouldn't have had children.

Being a mum is the only thing I ever wanted to do, and thought I might be any good at, but seeing my friends, and reading stories on here about teenagers who smear, sever mental health issues and the lack of support available to families with children who have disabilities, absolutely terrifies me.

Is this a worry that ever crosses your mind whilst TTC?

I really don't mean to offend anyone, and I know that people love their children unconditionally, despite difficulties etc.

I have the same worries. I worked with children with complex care needs and I could see how tough things were for them (when poorly) and for their families.
I am pregnant and I went for a NIPT test privately to screen for some genetic conditions. That all came back with a very low probability, and at the 20 week anatomy scan all was well.
There’s always a chance of a birth injury or a later diagnosis of a genetic condition, developmental condition or autism… these all worry me but tbh what can you do once that’s your reality? I’ll just have to get on with being the best mum I can be to that kiddo. Becoming a parent is full of risks!

I want to make it clear, I'm not talking about children who need additional support in every day life, to be able to live their lives to the fullest, I'm talking about profoundly disabled children who then grow in to profoundly disabled adults, who will never live independently.

I'm talking about violence, biting, feces smearing, unable to go to school etc.

The whole point of the thread was to see if others took these thoughts in to account as much as I do when ttc, or am I on my own with this concern.

Congratulations on your pregnancy @PopcornBandit I hope you have a happy, healthy baby x

I had my second baby at 42, 13 years after my first. My gorgeous little boy was diagnosed with autism at 3 and later on combined type ADHD. He is a fabulous chap and I can't imagine him being any other way.

Also don't confuse neurodivergence with being unhealthy. I had a happy and healthy baby, just a different one.

Something I would remember, OP, is everyone responds differently. Anything you read is the view of that person at that time and might be very different a few years later.

We’re a neurodiverse family. I was adopted and didn’t get a ND diagnosis until I’d realised my son was ND and all the symptoms also fitted me! Some of our friends have children who are more seriously affected by ND including autism. It’s really dependent on their lives and personalities how they manage it. My ds is able to function relatively normally, but still has issues that make life harder. However, he nearly died as a baby and ended up with kidney issues, so it wasn’t plain sailing. I did delay having a second until I could be sure I could cope with that type of situation again. It wasn’t genetic so change was minuscule, but once it’s happened once, it’s there in your mind that something similar is a possibility. I think a lot of the time you can’t know how you’ll deal with these situations until they happen and in a way, that’s all of our lives. We don’t know what’s going to happen to us, but we can try to make sure we are in the best place possible mentally and physically for general life.

It’s a good thing to consider, but there’s not a huge point fixating on it because you’ll never know unless you go ahead and try. All you can do is get yourself in the best place possible first, mentally and physically, to do that.

I did find out I was having a child with disabilities so chose to terminate, it’s something I never ever thought I would do myself though I have always been pro choice. People are generally liberal minded and quite supportive of women having an unwanted PG terminated but are often more critical of us who choose to terminate a child with disabilities. My main reasons were I just didn’t want to always be a carer and what happens to the child after you have died, I was 40 when I discovered this PG had an issue. DH uncle and aunt had a child with quite difficult disabilities and their marriage could not take the strain and I knew a woman whose DS had complex needs, I looked after him twice. I just couldn’t do it again as it was so stressful so I take my hat off to those parents who soldier on through with what must be a very difficult life but given the choice I chose not to have that life.

Obviously many children and adults become disabled but I made that choice.

Your fears are driven by anxiety I suggest some therapy before you even try to get PG.

Anxiety & OCD are pretty common amongst the neurodivergent community - are you sure you're neurotypical OP?

I understand your anxiety. This is one of the reasons I didn't want to have a third child, but it wouldn't have stopped me having my first or second.

@worrywilma I worry/worried about this too. I was really anxious about having a disabled child as I'm not a strong resilient person. I see a mum in town pushing her teenage son around. He can't speak or eat and doesn't seem to have control of any of his limbs. Living with that terrifies me. However I have a healthy ds and am pregnant with my second. It feels like rolling the dice again. Especially as I feel so lucky to have my healthy DS already. But I just have to remind myself that the vast majority of children are healthy and grow into independent adults. The odds are massively in your favour and we can't let fear make us miss out on life.

This^
there are lot of possibilities when things can go shall we say ‘ not ideally’. There might be problems at birth, additional needs straight away or later as a result of an accident. It’s the plain truth.
You can do tests for certain things but not for all. You can’t predict everything. I think it’s normal to worry as it’s a very big decision but there is no way to get any guarantees. My only advice as a parent of a child with additional needs is to have your life as much stable and sorted as possible beforehand and hope for the best.

@TheFormidableMrsC I'm not confusing the two, I promise. And as I have said, im not talking about ADHD or mild-moderate autism, But a teenager who is unable to toilet themselves, smears feces and is physically violent, is not what I would describe as happy or healthy.

The point of the thread was to work out if I could be a parent, you're opinion is no, and that's what I'm her for. Thank you for telling your story.

@ChaosAndCrumbs @TheUnthinkable thank you for your stories. It's good to hear from different people and get their perspectives.

@herewegoroundtheblueberrybush I have suspected I may be ND due to my OCD and anxiety but I've never explored a diagnosis.

I suggest you do explore a diagnosis. If you yourself are ND then the odds of having an ND child are high. And unfortunately you can't choose what type of ND you get. I'm not saying you would choose not to try but surely it's crucial information if you're considering it already

@worrywilma You’re very welcome 😊 I would maybe explore diagnosis yourself, maybe look into it and see if you feel it fits. However, also explore the positives people have found in raising children with additional needs - whatever they might be. My friends and parents were fab when my son was unwell and, equally, I’ve met some wonderful people through trying to get him ND support. One of my family members has Down syndrome and I know his parents also found the people they met and the friends they made were wonderful. It doesn’t always make the day to day an easier thing in the moment, but there are lots of people who would count many positives alongside the day to day tough stuff.

I was terrified too OP but with a particular fear of birth injury. I chose to have C section because of that.

There are so many unknowns when you have a child. Ds has autism, severe learning difficulties and epilepsy. He has significant care needs. There isn't a history of any of his conditions in my family. I decided not to have any more children due to the risk of having another child with additional needs. Initially though he was a normal baby and only developed epilepsy at 12. I love him to death but life is exceptionally hard. I fully understand why you are concerned, it's a risk that everyone takes when they have a child.

This is such a massive thing to wrap your head around if it happens. Big if though! You have no idea what you will do until it happens. I had 4 rounds of ivf and then lost one of the twins I was carrying. Then I was told that the remaining twin would probably be stillborn and would certainly be born very disabled.

Before then, I imagined that I would terminate in that kind of situation. I didn't. I couldn't. Every fibre of my being said I had to meet my baby. Even if it was to just hold a wee body, it might be my only chance to see any baby of ours.

I was terrified that the baby would have a horribly painful life if they survived, and that was what made me think I needed an abortion. I was assured that was not at all a scenario. They would pass very quickly, or if they could survive, then they would be closely monitored for stress in nicu.

So on we went. Lots of stuff happened in the pregnancy. It was the single most traumatic thing that I have done, and I have had some bad times!

So many people involved, right the way through and beyond birth. Yes, they survived. Thrived. Exceeded every expectation. And he is my perfect boy. There have been ups and downs. Mostly early. Surgeries. But honestly, by age 2, it was mostly settled.

We have the odd thing crop up, but is that any different than with any child? He is waiting for an asd assessment. I am pretty sure he is autistic. So fuck! He is a delight. He completed my world, and I adore him. He has so much to contribute to the world. Every time I think of terminating him, I shiver. Thank goodness I went on instinct.

I've read all you've said and on balance I wouldn't advise having kids given your fears.

I am a parent of a profoundly disabled child. I don’t think your worry is silly. It’s the reason I’m not having any more children.

However it’s statistically really unlikely that it would happen, and it would be a shame if you didn’t have children for this reason. There are many reasons people do and don’t have children, but it’s important to acknowledge that whilst this is a tiny possibility there is a much greater chance of you having healthy children, so it shouldn’t be a major factor in your decision making.

The vast majority of children are healthy.

OP I am that person it happened to. Once I got over the grief of not having the daughter I thought I was going to have and threw myself into loving her for everything she is, I realised that yes although it's extremely stressful, constant appointments, fighting for services etc the 'highs' we have with her are incredibly high. She can't walk or talk or use her hands or eat, but by Christ her incredibly dirty laugh, evil little sense of humour and beautiful smile lights up a room. Everyone who meets her falls in love with her and she brings so much joy to us all. Even what seems like the worst thing in the world , really isn't, but please bear in mind this is VERY UNLIKELY to happen to your child. Our daughter's condition is 1:10,000 births so I feel very privileged that she came to us, despite all the extra hardships . Worth every second of it. Try not to be too anxious op, whatever baby you have will be treasured and loved, no matter what additional difficulties might come along with them

@Jennywren2000 Thank you! You're right, of course, statics and all that jazz. I agree it would be a shame if I let this, what is basically an intrusive thought, win.

@flexigirl thank you so much for your story, it made me tear up and laugh at the same time.

@Snugglemonkey Your little boy is clearly made of strong stuff and there's a lot to be said about instinct.

@hotginbottle thank you, I was looking for different perspectives and I'm glad I'm getting good advice etc from everyone

My son has multiple diagnoses but is 'high functioning'. I often wonder if I would make the same choices if I knew then what I know now... and I would absolutely still have him but I would have maybe prepared myself much more than I did to have more support around me (closer to friends/family, more savings perhaps) which could have made our world an easier place. I guess that can apply regardless of disability
I think it's practical to consider this but it wouldn't have stopped me from having my son (I just wish things were easier for us)

Personally I don't think anyone who hasn't thought about how they'd cope with a disabled child is ready to conceive. It's a possible outcome. You sound like you are asking yourself the right questions. Perhaps go and hang out with some autistic people if you are specifically worried about autism?

Please be aware that plenty of verbal kids without learning disabilities struggle to attend school, have violent meltdowns and smear poo when they are growing up. This doesn't stop autistic children being adored by their families. The bigger problem is discriminatory attitudes and failure to make the provision available that kids need, resulting in unnecessary distress, and pressure on families.

@greyflannel I totally agree regarding the provisions, or lack of, is horrifying for families. That's what the mums on the SEN seem to to crying out for, help, and there just doesn't seem to be any at all.

I hope this thread hasn't come across as discriminatory, as that's absolutely not the intention. It's more about a specific, intrusive thought, that I wanted to find out if anyone else had.

I think this is a perfectly normal thing to be worried about. I certainly was.

Lots of people are neurodiverse or disabled - its a good thing not to make assumptions about. But if that is becoming a source of anxiety, or the thoughts continue to feel intrusive, perhaps speak to your Midwife?