Worries about having a child with disabilities

https://sparkforautism.org/discover_article/autism-and-prematurity/

Well I have 2 autistic kids and one with ADHD and I would absolutely definitely have exactly these same kids again, and no it hasn't always been easy, but it certainly hasn't been a life filled with stress, worry and fear. Maybe because I have a strong view that kids are who they are.

My kid got an ehcp easily though it wasn't much help when he started to get too anxious to attend school. We just thought he needed to hunker down and feel better though, we never pushed for services or residential or anything at that point. Maybe our lack of pushing is why we never especially resented the limited services he received. We felt that time and low demands were the only things that were going to help.

I occasionally look wistfully at NT families and think it would be nice if my now teen and adult kids hugged each other or had a siblings WhatsApp. They very much move in their own individual orbits with me and DH at the centre of each individual's orbit, but they aren't really in each others'. But I love the banter, the puns, the pedantry, the recitation of facts etc that we get instead. And yes, you love your kids unconditionally.

How would adoption be any better? I mean the child could still develop a disability later on in life

You're missing the point, some people don't want to risk being a full time carer for the rest of their life regardless of whether this is through a disability at birth or one that occurs later in a child's life. You are indeed correct that those who know that they don't want that life regardless of how unlikely it is shouldn't have children, hence why it's important to really think about this when deciding whether to have children or not. OP is being entirely sensible, I wish everyone would realise the enormity of being a parent and put consideration into whether parenting as a whole is for them or not.

This isn't accurate.

Autism isn't 'highly likely' when a baby is born prematurely. You are more likely to see autism like traits, this is because children born prematurely are more likely to have things associated with autism like sensory processing disorders (due to being exposed to touch, sound, light earlier than they should). but a diagnosis of autism is not highly likely.

When my baby was born prematurely in 2019 we were told the chances at her gestation (32 weeks) were about 2% vs a baby born at full gestation about 1.4%.

I had those fears myself. No one can assure, with certainty, that if you have a child they won't have any additional needs unfortunately.

But there is every chance that you would be able to meet any challenges that might come your way.

It could be that you are catastrophising because you don't feel safe because of what happened to your friends or some other reasons.

You are doing the right thing in talking about your feelings and I wish you all the best.

I think most people thinking of having children worry about it to a degree, but if they want children, it’s a chance they take, as long as they feel they could deal with whatever life throws at them.

We knew we’d be fine parenting any child. If I felt like you do, I wouldn’t have had children. Also, having seen that OCD tends to get worse in pregnancy and after having children, and the impacts of that on partners and children as well as the person with OCD, I wouldn’t have children if I had it.

It’s a very personal decision and one only you can make. If you do go ahead, I think you need a good support system around you and access to regular therapy/CBT.

Also a NIPT won’t detect everything.

I’m one of those parents. You may work in that field but does that qualify you to speak for every parent who are bringing up disabled children?

Yes I will judge! It’s offensive. What happens if child gets hit by a car, paraplegic, needs 24/7 care? To be born with nd is something you just have to deal with, the same as any disabilities.

anyone who seems disabilities too much for them to care for, shouldn’t have children. It’s fairly simple.

@Everythingzrosie yoyr comments come across as very judgemental and not constructive at all. I think the OP is the complete opposite of naive, taking the time to consider whether you could cope with the challenges of raising a child with additional needs is actually very mature. I wish more people put this level of thought into whether they are fit to raise children well, neurotypical or not.

OP I completely understand your thinking. I work with children and teens with complex and profound disabilities, including autism, Downs, genetic syndromes etc. I am also part of a diagnostic team for autism so have seen the journey parents go through when given that diagnosis.

I can tell you, the majority of the clinicians I work with would have the same worries about having a child with additional needs. People who don’t have the experience of interacting with these children will make you feel bad for thinking this way, but they absolutely shouldn’t. Until you see the struggles and sacrifices these families have to make, you can’t ever truly understand the impact it has. I’m also not talking about children in mainstream with some additional support, I’m talking non/verbal children with severe profound learning difficulties etc that are not often seen in everyday society. The Majority of the population have no idea what these families go through. I’ve also heard frequently, especially from parents of children with Down syndrome, that everyone is really supportive when the child is younger and ‘cute’ but that support quickly falls away as the child gets older and enters teen years.

having said that, I’m now 17 weeks pregnant after much deliberation and soul searching on what I would do if I were to have a child with additional needs. It’s a very personal decision, I know one of my colleagues had some counselling to overcome her fears on having children as a result of where we work so that could be an option for you. Ultimately having children is a gamble and we can never guarantee how the child will develop. I’d strongly recommend a NIPT test to rule out some of the anomalies that can occur if you do go ahead. Best of luck with your decision

It's normal to worry about this, but would be unusual to make decisions based on that worry as statistically it is very unlikely to happen.
Your partner /husband would be in an accident/ have a stroke and become severely disabled but it's unlikely. Life is complex. You have to be an optimist and be prepared to deal with worse case scenarios if they happen.

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

Well precisely, this seems to be what OP is weighing up which is entirely sensible if you know you wouldn't cope well with the potential of having a disabled child that required lifelong care.

OP I personally think it is reasonable to consider this, plenty don't and just assume everything will be as the text books and unfortunately that's not guaranteed. I have a friend who has had to give up her career (which she loved) to become a full time carer for her disabled child and her life is unrecognisable from before children. She is an amazing mum and loves him, but often says the same that if she could turn the clock back she would; certainly gave me pause for thought. Its tricky as it is unlikely if you don't have family history but not impossible.

Yet here we are still discussing if these children/adults have a place in society snd what they bring to it.

No, its adults considering the possible impact on their lives of potentially having a profoundly disabled child who needs their constant care and will do for the remainder of the parents life. OP by their posts isn't referring to a child who is ND but one who is severely disabled and the level of self sacrifice that would come with that. Entirely sensible to consider.

@worrywilma he is currently in
assisted living accommodation. We sourced this for him last year after consistent violent kick offs about him not having his own place. He gets extremely angry with us because he is the oldest yet he is much younger mentally. He thinks that oldest is in charge which ironically is a very childlike attitude. He has been in his current accommodation for 7 months but we are already discussing terminating the arrangement as we have seen a massive decline in him. We don’t believe the decline is because of his living arrangements, we think it’s coincidental. Parents aren’t around and honestly wouldn’t cope with him anyway. It’s looking like he will move back in to our house.

As a mother of disabled children, I’m offended by some of these comments.
Are children only accepted if they are NT and able to fit into society and be society norm?
Yes we can share opinions on if we would cope with a disabled child. Yes we can fear it.
What we shouldn’t be doing is discarding disabled children like their lives aren’t worthy of being here because they are ND.

We have come a long way since 1700 and there’s Acts in place to protect the disabled. Yet here we are still discussing if these children/adults have a place in society snd what they bring to it.

I honestly think that if anyone TTC and want the easy life then id definitely not have a baby. Or have a partner because god forbid you ending up wiping their backside or have to spoon feed them as an adult.

I think it's relatively normal, as crazy as it sounds.

It's something I reflect on, especially as a few friends with children that have SEN.

I think this would worry most people. I would weigh up the risks and the reality of if/how you would cope if it happened? (Is it worth this risk?). The other consideration which I find on MN is usually absent, is the child. If there is a high chance it will be disabled and struggle, is it fair on them?

Honestly, we thought a lot about having a second child. But once my son was in nursery/preschool, I changed my mind. 2 of the other children in his class have autism, I'm talking nonverbal, hitting, kicking, screaming, etc, and I know I definitely couldn't handle that. Much respect for the parents that can, but for me it wasn't work upsetting the happy family I already had

Yes, I worry, but what can you do? It's one of the many, many possible outcomes of creating a human. Is it such a worry that you'd consider not trying? Maybe adoption is a better option?

@worrywilma to answer your query, you are not alone with your concerns. I work with adults who has learning and physical disabilities and the range / scope gave me the fear when I was TTC. I have insight in to the lives of the parents / primary caregivers and it's absolutely not a life I would choose for myself or my child.

However, it's a risk I decided to take. I got all the standard testing done and all was fine. My son is now 4.5 and is amazing. He has a communication disorder and is under assessment for ASD (doctors are really on the fence). If I'd known all this before he was born I wouldn't have had him (due to my ignorance). BUT, I'm so glad I didn't know and that he's here. He brings me immense happiness and is the light of my life. I worry and stress about the future but I would rather that than a life without him.

I understand what you are saying. My brothers autism has meant at 37 he cannot read or write, he cannot live an independent life, he cannot work, he has no understanding of social situations, he’s angry and depressed, he has panic attacks and violent meltdowns, he will never be able to work, he’s aggressive, he’s never had a relationship and likely never will (probably for the best considering his aggressive nature) his level of understanding is akin to a 6-10 year old depending on the subject. Despite our best efforts, his life is extremely limited and if I knew my child would have the same future I wouldn’t do it. I’ve chosen to remain childless. For many reasons but that’s partially why