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.

It’s something that crosses my mind occasionally but nothing we can do except not having kids to know for sure so just gotta go with it

The thing about disabilities though is that they don’t just happen at birth. You could have a non-disabled child who ends up disabled through illness or accident.

@Jeragade123 @BintuBombatu
I appreciate both you're responses, thank you.

@BintuBombatu that's actually never crossed my mind before, and of course you're right.

Very few parents have it plain sailing with kids from birth to adulthood (and into adulthood). Disabilities, mental health issues, trauma, clash of personality, school issues, death etc. Just nature of life. Autism typically runs in families so if you are really concerned then you could theoretically test yourselves and your parents! As an autistic adult I’d say it’s a challenge but not something to fear, and my life has a lot of value. Might be good to speak to a therapist if it’s something you feel is preventing you having children

If it helps I am autistic and so is my son. Plus if I do conceive it would very likely would be too. Tbh I wouldn't know what to do with a neurotypical child lol. It's hard but so worth it.

@Inmyonesie thank you for your message. I know a few ND adults who have challenges etc, and I myself have some mental health problems, anxiety and ocd.

I think my brain has fixated on potentially bringing a life in to the world with a profound disability, so I'm trying to think of every scenario so as to try and control it? If that makes any sense.

Lol I love that @Hannahbally

I think it's normal for this to cross your mind while TTC (not specifically autism, but a child with a disability or health condition of some kind). That's why, when people ask if you want a girl or a boy, the "standard" answer is "I don't care as long as they're healthy".

Erm I have autism and a few friends also doof varying degrees and we love life. Any child can end up disabled after birth because of illnesses, accidents etc so I find it odd thinking like this

Have messaged you OP x

@Ladyj84 I too have friends with varying degrees of autism and get on with life just fine, I'm talking about severely disabled and unable to go to school, use the bathroom, violence etc.

I do read the SEN threads quite a lot to gain some understanding of mums who's children are affected so profoundly, that they're absolutely exhausted, with no support form services.

Hearing of how some parents are being attacked by their children, who have no verbal communication, smear feces every day, and how this goes on in to adulthood, does worry me.

I try not to be ignorant of how people with disabilities, and parents of children with disabilities, are affected by their challenges.

I just wanted to gauge whether my worries were unique to me, or I'd others has the same concerns.

I think it's safe to say, it's a me problem. Which makes me sad as I think it's only fair to rethink being a parent.

I work in a school and about a fifth of each class will have children with some sort of additional need. However, most people wouldn’t notice these.

I also have a grown up child with severe disabilities so know how hard life can be. I’m not one of those that say “I wouldn’t change him for the world.”

That being said, most children are loved and adored by their parents and there’s no apparent reason why yours wouldn’t be either.

For most additional needs, they aren’t picked up until you’re madly in love with your child.

For me it would be very simple . If there was any autism in the family I would'nt have a child . If there wasn't I would .

Some of these SEN threads about the lives of families with severely autistic children are heartbreaking and I know I wouldn't cope .

All the best in your decision , it won't be easy .

I've had 2 children and pregnant with my 3rd, and i think we all have these concerns, however if we let it bother us too much nobody would ever have children. My partner has ADHD, so there's a chance our baby could too, but it's not the end of the world and we will handle it together.

We were more concerned about physical disabilities, and were prepared to TFMR if our baby had downs (she doesn't thankfully as tests came back clear). But that's a very personal choice and nobody should judge others for the choices they make in this situation.

As for autism though, there is no way of detecting this in the womb, so its always a risk you take.

You won’t know your child is autistic from day one even if they are. By the time anything does show its face, if it does, you will already love your child and be its fiercest advocate.

I've got three kids ,the last two have autism (nobody on either family has it) .
They are hard work but it is what it is.
Would i have more children no but i don't regret the ones i have

@HalloumiGeller I agree with you completely about judgment. I personally would be ok with a diagnosis of downs (I think) but I absolutely understand why you wouldn't TFMR. I hope you enjoy the rest of your pregnancy xx

@hattie43 they really are heartbreaking and I'm the same, I would not cope.

Thanks everybody for the advice and thoughts

@HalloumiGeller why you would, sorry

But any child can be "normal" then develop disabilities.
I have a child with autism, learning disabilities etc. then I have a child who was born perfectly normal, yet developed type one diabetes at the age of 7.

You shouldn't be a parent if you're not prepared to deal with the could be.

I do worry about this too OP, but that’s because we are higher risk due to age and family history. We also have an existing child and lack of a family support network so would be concerned about our capacity to cope with a child with additional health, learning, etc needs and impact on our daughter. If this is a big worry for you it would be worth thinking about what factors would help if it was to happen - do you have family and friends support, enough income to take additional time off work or go part time, etc etc. These are the sorts of things that will be helpful as a parent regardless of whether your child has additional needs. Just having some flexibility in the system. As others have pointed out there are lots of things that are risks, not just autism etc.

You also have to remember people post on threads when they are looking for support and advise. They rarely post the good times and amazing things that can happen. For example my son is practically a genius when it comes to music. He can play pretty much any instrument and can hear a piece of music once and then play it. Some of the best people are autistic. For example Anthony Hopkins who is not only a phenomenal actor he's a talented painter and composer too. Dan Aykroyd and Darryl hannah too.

OP I totally understand and it’s contributed to me stopping at two children. I have two, healthy children and feel I don’t want to push my luck or tempt fate by having anymore.

I have a teenage DSS who is developmentally delayed (around 2), has a brain abnormality/genetic condition, ASD, ADHD and some others too that I won’t list. Parenting him is HARD work and he’ll never be anywhere near independent, he is more dependent than my own young children and they both overtook him developmentally. On top of that is the violent and aggression he shows. I was really worried my children would have the same.

Problem is that not all these disabilities are shown in pre natal screening so it really is pot luck.

Thank you ❤️

We knew that we just couldn't handle it, especially as I have 2 other children to consider. I totally admire parents who raise disabled children, it's no picnic!

I think this really is out of your control. You won’t know about many conditions until the child is born and much older. Autism is also highly likely when the child is born prematurely- another thing that will be out of your control.

This. ADHD with a child with ADHD here, autism and ADHD in the family.

DD is technically moderately severe but with support and resources is fairly 'easy'. But the first few years were rough with hard work on no sleep.

If you don't know that you can do hard work on no sleep, rethink.

Plus, the script you have about being bad at everything except having children needs looked at. Not something to put on kids. Counselling might help.