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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think parent of Neuro-typical children just don't get it

90 replies

sunflowerstreet · 21/11/2022 17:05

I just don't think they get it....

My DS is non verbal autistic and he's really opened up my eyes now to understand the challenges we face as parents of ND kids! My other DC is NT and I really never appreciated how easy it was. I remember years ago giving my friend who had a DS with ASD advice on how to handle his diet (cringe) and now i have a child myself who only eats 3 foods and wouldn't eat unless reminded throughout the day I totally cringe at me thinking it was as simple as 'just do this' 'just do that'. Although it was well meaning. I often feel myself wanting to scream now a days when I get patronising advice from others.

Once it became apparent DS was different I joined some parent support groups and it really opened my eyes to the lack of support and understanding that many people have for children with learning difficulties etc. I had to distance myself from some friends who seemed to treat my sons sensory issues and traits as naughtiness or would try to relate my situation to theirs with their NT child.

So AIBU to think if you've never had a ND child you really just don't get it?

OP posts:
SEND2022 · 21/11/2022 17:07

Yes, I get this 100%. Particularly the "you just need to be firm and they'll give in". Nope, that isn't how it works.

And the looking after the child is the easier part, fighting for everything else is so relentless.

But I also think people aren't unreasonable to not get it, because until you've lived it, its hard to fully understand.

Bobbybobbins · 21/11/2022 17:10

Yes two with severe LDs and ASD, feel like I'm constantly cleaning up bodily fluids ATM!

MarigoldPetals · 21/11/2022 17:11

I think you’re right, but posts on here that explain what it is like do help people to become more aware.

ranyBoskie · 21/11/2022 17:11

I think with most things in life, unless you've walked the same path, people never really get it

actualnamechange · 21/11/2022 17:12

So AIBU to think if you've never had a ND child you really just don't get it?

I think some people want or try to understand these things more than others. Some are able to understand it, some are not, but you are not wrong in saying until you have lived it you really have no idea of the reality.

WeAreAllLionesses · 21/11/2022 17:12

If you didn't get it why do you think others will? Genuine question.

loubielou31 · 21/11/2022 17:14

I definitely don't get it. I have watched my friends parent their ND children (different friends and different children) and am in awe at the skills they have that I just don't possess. Parenting is hard but ND means they have had to plan for things that I just couldn't have imagined. They do an amazing job and I bet you do to.
But YANBU you don't get it if you haven't lived it.

InTheFutilityRoomEatingBiscuits · 21/11/2022 17:14

YABVU to suggest that only parents of ND children understand what it is to care for a ND person.

I have been a carer for ND family members for decades, just because I’m not their parent doesn’t mean I don’t understand.

I could tell you you have no idea what it’s like to care for someone with learning difficulties who is bigger than you are. Or that you have no idea what it’s like to care for someone with learning differences when you don’t have parental authority. Or that you have no idea what it’s like to meet your first severely autistic person at one day one. Or to be called from your classroom as a child to come and calm your sibling who is having a meltdown. To fight for he rights of an autistic person for decades, to explain autism to people in the 1960s, 70s,80s.

Im not a parent of a ND child but believe me I get it.

Original poster
sunflowerstreet · 21/11/2022 17:14

Thanks for the comments!

Just to add I am not bashing people who do not understand as like I said before I had DS I thought I could relate and understand my friends who had ND children and now I realise how wrong I was.

Some days it just feel so frustrating. DS is completely non verbal (7) and just in the last week I've had 'have you ever had his hearing checked' and 'it must break your heart he's never said mum' I know these people only meant it in a nice way but it just made me think have until you've lived it you just can't understand

OP posts:
AntlerRose · 21/11/2022 17:15

Of course not, but there are so many things you cant truly get from the outside. I dont know what its like to be a single parent, or a refugee or beautiful or french.

Its why its important to listen and be compassionate to others.

Original poster
sunflowerstreet · 21/11/2022 17:15

loubielou31 · 21/11/2022 17:14

I definitely don't get it. I have watched my friends parent their ND children (different friends and different children) and am in awe at the skills they have that I just don't possess. Parenting is hard but ND means they have had to plan for things that I just couldn't have imagined. They do an amazing job and I bet you do to.
But YANBU you don't get it if you haven't lived it.

Lovely comment! Thank you ❤️

OP posts:
Cryingbutstilltrying · 21/11/2022 17:16

So true op, so true.
I especially enjoy advice from my family who have younger, NT children. Why wouldn’t I go out and get a job during school hours now?! Oh wait, they’re home more than in school. That’s going to work.
It’s got to the point that I just don’t say anything, post anything online, make any comments at all, because it’s my way of protecting my own sanity.
But yeah, I don’t really expect them to get it. I don’t want advice, often I just want to be allowed to rant.
I’m glad they aren’t also walking this path, but I would like some company occasionally x

EarlofShrewsbury · 21/11/2022 17:16

My DD has ARFID as a comorbidity to her ASD and I'm sick to the back teeth of people telling me not to give her one of her 3 safe foods.

'She won't starve, she'll eat the stuff you give her once she's hungry enough'.

No, she will starve.

You wouldn't eat dog poo if you were hungry enough.

Drives me nuts.

Untitledsquatboulder · 21/11/2022 17:17

Well I've got a nd child and my experience is quite different from yours - at least in some ways. My friend whose nt daughter has afrid would be able to empathise with you over restrictive diets though.

Most of us get our own experience and ones similar to it. We don't have great insight into other's experiences and why would we?

MelchiorsMistress · 21/11/2022 17:17

Of course they don’t get it. Life has many big challenges that people don’t get until they have experienced it personally.

Decafflatteplease · 21/11/2022 17:17

Yep I think the disabled life becomes the new normal. I was telling a friend about how our DC is under assesment for oxygen support and she was like omg decaff, that's huge, you must be so stressed and I was like meh, let's just crack on. As it's become so normal now.

NameChange1718 · 21/11/2022 17:17

Agreed!
I’m autistic and I didn’t eat for 3 weeks when my mam tried the tough love approach with my diet. I ended up in hospital, very very poorly and everyone backed off.
Somehow I was only diagnosed at 23. Even then paediatricians told my mam not to give in as I was bright and defiant. I ended up really unwell due to that shitty advice.
I now eat LOADS as an adult because it’s on my terms, I have control and I always have a safe food on hand when I try a new food. I still won’t ever touch soup or curry!!
if you haven’t lived it, you can’t really understand it

Original poster
sunflowerstreet · 21/11/2022 17:18

InTheFutilityRoomEatingBiscuits · 21/11/2022 17:14

YABVU to suggest that only parents of ND children understand what it is to care for a ND person.

I have been a carer for ND family members for decades, just because I’m not their parent doesn’t mean I don’t understand.

I could tell you you have no idea what it’s like to care for someone with learning difficulties who is bigger than you are. Or that you have no idea what it’s like to care for someone with learning differences when you don’t have parental authority. Or that you have no idea what it’s like to meet your first severely autistic person at one day one. Or to be called from your classroom as a child to come and calm your sibling who is having a meltdown. To fight for he rights of an autistic person for decades, to explain autism to people in the 1960s, 70s,80s.

Im not a parent of a ND child but believe me I get it.

Sorry to offend perhaps I worded it poorly. I was meaning mostly people who have no experience with ND children/adults. Of course I do feel parenting is a little different as it's 24/7 365 days a year and very emotive when you are fighting hard for your own child. But again sorry and respect to anyone who works with, cares for, has grown up with anyone ND

OP posts:
Original poster
sunflowerstreet · 21/11/2022 17:20

NameChange1718 · 21/11/2022 17:17

Agreed!
I’m autistic and I didn’t eat for 3 weeks when my mam tried the tough love approach with my diet. I ended up in hospital, very very poorly and everyone backed off.
Somehow I was only diagnosed at 23. Even then paediatricians told my mam not to give in as I was bright and defiant. I ended up really unwell due to that shitty advice.
I now eat LOADS as an adult because it’s on my terms, I have control and I always have a safe food on hand when I try a new food. I still won’t ever touch soup or curry!!
if you haven’t lived it, you can’t really understand it

Love this! Gives me hope for my boy who really struggles. I hate when people suggest if he doesn't eat it then he can't be that hungry. My son would literally just never eat it's just not that simple. Congratulations to you it sounds like you are doing fabulous!

OP posts:
Untitledsquatboulder · 21/11/2022 17:21

Have you ever been starving @EarlofShrewsbury? You would not believe what you'd eat. I'm not suggesting that you try starving your dd but your post is an excellent example of someone talking about something they don't really understand.

MRSDoos · 21/11/2022 17:21

You’re never going to understand or “get something” until you’ve gone through it

I realised this when I went through losses and got unhelpful advice and opinions from those who have never experienced it
I realised it wasn’t their fault for not understanding because before I went through it myself I didn’t “get it” when I watched one of my friends lose her daughter at 24 weeks pregnant. When it happened to me, I got it.

I imagine this is like anything in life though, everyone goes through different experiences and none of us “get it” until we’ve been there.

I am currently pregnant and do not have any children yet. I can’t imagine how hard it must be to here unsolicited unhelpful advice all the time. It must get frustrating!!

Alertthecorgis · 21/11/2022 17:26

I think a lot of people don’t get it. I don’t think you can unless you live it. I have two ND children. Both are challenging though the eldest (12) has gotten easier with age though requires a lot of emotional support. Youngest is 10 and very challenging. Non-verbal, severe adhd. Life is hard. I also have an older NT child and even on her worst days she’s nowhere near as challenged as my ND children. We’ve been through discrimination from schools and nurseries. Advised not to return to a toddler group. I spent the kids toddler years alone walking around our city. I’ve been hit, kicked, spat at, had things thrown at me.

TheNoodlesIncident · 21/11/2022 17:27

Someone - who is NT and whose DC and GC are NT - passed a book on to me about how, basically, your child is affected by conditions like autism because you're feeding them crap junk food.

I can't see her in the same light as I did before, because she's read that and instead of thinking "What a load of crap, how did they find a publisher to publish that" and bin it, she gave it to me to read.

Presumably, I was expected to have a light-bulb moment and realise I had caused the autism and I just needed to stop giving ds the only foods he would eat and revert back to the ones he wouldn't.

They don't get it. Some will try really hard to, and some will pretend to, and some will openly not give a damn. It's the way it is. I don't "get" lots of other issues because they don't effect me, it's possible to empathise with other people's distress though.

TinFoilHatty · 21/11/2022 17:28

Untitledsquatboulder · 21/11/2022 17:21

Have you ever been starving @EarlofShrewsbury? You would not believe what you'd eat. I'm not suggesting that you try starving your dd but your post is an excellent example of someone talking about something they don't really understand.

Have you experience of ARFID? Then you would not ever suggest taking away a safe food or all the safe foods. Bloody hell. (sorry for swearing)

Skyedart · 21/11/2022 17:28

My DD isn’t autistic but she has a disability and several sensory issues and health conditions and no, no one without a disabled child gets it! And of course they don’t they haven’t lived it so I don’t expect them to get it. I just expect no judgement of things I have do and change for her and no ‘helpful’ advice!