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 never even thought about disabilities etc until I had my daughter - she was perfectly healthy in all the scans and even at birth. It wasn't until 6 months later when she started having seizures and needing a feeding tube that we suddenly became bewildered parents to a severely disabled child. She's now 5 and thriving in her own way. But she'll never walk or talk or eat food orally, and will need a lifetime of 24/7 care. There's no support really, it's incredibly lonely but we have had no choice. If I had my time again I wouldn't have had her - purely because I hate seeing her suffer when she's not well (but when she is well she's bloody amazing and a true light in our life)

Statistically you're likely to end up with a healthy NT child but it really really is the luck of the draw unfortunately. Only you can tell yourself if you could live a life with a severely disabled child, and it's ultimately it's a gamble. Nobody asks for this life, and I admire every single parent who is doing their best.

Op, I’d say that you are not ready to be a parent if the child you have is already only fit for you if they don’t come with difficulties. As a mum of 5, no child is easy, healthy 100% of the time.
you seem very set on certain behaviours of autistic people that you’d not cope with. Smearing, biting etc. but mild autism you’d be fine with. It’s an odd way of thinking. And naive I think.
its Definitely a you problem.

I didn't worry about it at the time I had my kids 20 years ago but think I would now given that so many children seem to be being diagnosed with autism/ adhd now. I guess it's just better diagnosis, but does seem to be a huge number. One of my close group of friends chose not to have kids as had a close relative with a child with severe autism and she didn't want to risk it.

It's exactly that - a lottery. Which is why adequate social provision is so important, rather than huge pressure being placed on indiviudal families to cope alone, without their children's needs being met by services whose role it is to support them.

Like a fool I used to think parents of disabled children were a bit like nuns; people your revere for their self-sacrifice and service, but who seem altogether a breed apart. Then I found out they are in fact 'us'. No idea about nuns.

My little boy is autistic and has no words yet and he has wholly completed my world. I adore him 🥹 he makes me smile every day. We listen to music together, hug each other, eat together holding hands, skip together and I couldn’t love anyone more. We have some tough times but I can honestly says that he brings me and my husband the most joy. We have our obstacles but there’s no way on this universe I’d be without him: his innocence and love for life is perfection in a little toddler.

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

@Everythingzrosie smearing and violence is definitely not something I would cope well with. Particularly from a teenager. I don't know anyone who could take that in their stride to be honest, but as you say, that might be a me problem. Thank you for your advice.

@greyflannel I used to think the same of parents of disabled children, now I realize they are under massive stress everyday, due to the lack of services availability to them. And I would not have known that if it wasn't for this forum. It's opened my eyes to the lives people are living behind closed doors.

@Prisonbreak thank you for your story. Is your brother in supported accommodation or does he live with your family?

@Bex268 your little boy sounds like a lovely gentleman!

@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.

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?

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

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?

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.

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.

@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.

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.

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.

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

@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.

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.

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?

Also a NIPT won’t detect everything.

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.

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.

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%.