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

[sunflowerstreet]

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 you are right. I didn't 'get it' until I had to.

Until I had a child with ASD I'm not sure I would have understood either. Now I bloody well do!!

Most people don't get things that don't directly involve them. That's human nature.

I'm ASD ADHD OCD and deaf. I get treated like shit because these things aren't tolerated in adult women.

This for me is correct

I work with children who are ND. I spend hours working to create strategies to help these children. Hours supporting them and pouring over their progress.

I am quite happy to admit even I have no idea what it's like having a ND child.

A child with severe arfid won’t eat something that isn’t a safe food. Ds is now 90% tube fed now due to his arfid. Before having the tube he would go days without eating and that was with constant access to safe foods.

Sorry if I worded it badly, I wasn't in anyway criticising parents of NT children of course it's not their fault they don't get it. I didn't until I became a mum to a severely autistic little boy, I think what I mean to say is if you have no experience of it then as well meaning as your advice is it can come across very insensitive.

I was once advised to put DS on the naughty step when he Stims (he will spin on the spot for up to 15 mins) to try and stop him as it's a bit embarrassing when he does it in public and I need to nip it in the bud.

I think as with most things you can try to understand and you can listen and be there for someone but as with many things lived experiences can give you a much better ability to properly get it.

Even if you have an autistic kid you might not understand....I have two of them and they are opposite in their needs a lot of the time. I've read posts where someone has posted "That's no excuse, my autistic kid does X,y or z so yours should too." Which is even shittier.

I guess the issue is, do you want them to get it? In which case you might have to spend some time / patience explaining it to people who are going to play a role in your kid’s life. And ditch those who aren’t willing to learn and adapt a bit.

Not least because ND is probably really different from child to child and someone who has experience of one kind of condition or one child, might just as well not get another one.

Of course people don’t get things they haven’t had personal experience of. People who enjoy full health just don’t get what it’s like not to have a body or brain you can rely on. People who are financially comfortable just don’t get what the experience of being poor is like. People who are straight just don’t get homophobia etc.

Surely people who work with ND children also get it?
I have NT children and agree that I would be like you used to be (if we lived in an environment with ND children, which we don't).
Other than care staff of ND children, who surely understand, you are being totally reasonable.

I had this with DS2. He's not even autistic. But if that boy doesn't want to eat something, he will absolutely starve himself.

DH has always been the same as well. He used to tell me when he was a kid that he would hide piles of food under his parent's sofa to avoid eating it!

DS1 is autistic and is actually one of the least fussy eaters in our house!

I don't get it and haven't been close enough to any ND kids to even start to gain an understanding. I would try though, to at least listen and learn if I do have someone in my life in this situation.

God !! that's awful !

Interesting that you have distanced yourself from some friends. Did any people, your friend for example, distance themselves from you when you didn’t get it and gave uninformed advice?

Appreciate your response.

I am a carer 24/7, as were my grandparents, parents and now me.

Honestly, I can honestly say I only really get my own ASD DC.
I have a SEN brother too, but would still be completely out of my depth with other SEN adults.
Most stuff washes over me, but every now again my DH has a rant to listen too.

I don't understand?

I've had to live with the stress and feeling of hopelessness for 7 years.

You are the one that doesn't understand.

My DD will get so distressed she will make herself sick at just the suggestion of trying something new.

And I don't mean sick from gagging at new foods, I mean sick though screaming/crying with anxiety and fear.

I understand what you mean, but please forgive others for not always get it right. Some of the people really want to help or “get it”, but nothing will ever be good enough. You also don’t get struggle of others if that’s not your experience. It’s normal, we don’t get something we didn’t go through.

Even then though working something and knowing your going home after the shift is different to living it 24/7

Thank you ❤️

Yes of course you can never get it unless it's your reality. Some people come close no doubt but with a child it's the reality that this is your story until you die. They will never stop being disabled at 18 and move out in the same way as a nt child. They will not die before you like a disabled parent. It's a lifelong worry.

I think you can find peace with it, but after ten years I have come to realise I decide what I get uptight about. So for example my sons disability socail worker keeps saying 'you need to see the bigger picture here'. We'll no I don't, thank you. If I want to loose my shit over this tiny one detail as to me, it represents the straw that broke the camels back, then this is me loosing my shit. You do not get to tell me I have failed the non existent handbook on humbly parenting a disabled child. It's liberating. I loose my shit and rage against how unfair it all is, and I cope pretty well I think. I'm never rude, I never shout, I never swear, I never offend anyone, but neither do I get the fob off. ( loosing my shit looks like me polity and calmly taking my LA to the LGO and tribunals when they break the law)

i don't do Mary Poppins, believing that God gives special children to special parents. I parent like Russel Crow in Gladiator. I never feel the urge to apologise For being my childs advocate. Like the Hulk, I'm always angry. I have every right to be.

You are absolutely right and sometimes I need to realise it's a me problem and not an everyone else problem. I'm that fiercely protective over my DS and I think that can make me over sensitive to comments sometimes.

I think you can equate this literally anything. Unless you’ve experienced something you often don’t truly understand. It’s not specific to ND children alone, it can be applied to lots of different hardships people face .

No of course not (or other close relationships. I have an adult sister who is autistic and has learning disabilities so would say I do understand more than most as provide care to her) But also think it's the same for most things, people don't understand what living life with a chronic illness is like if they haven't got one, or having a child with a significant physical disability, or a parent with a drug issue. People are really bad at understanding other people's reality.