To emphasise that neurotypical kids have different needs to neurodiverse kids

[DevilledEgg]

I mean of course I'm not unreasonable. I'm just sick of seeing comments on here (everywhere actually, but I'm here the most) from perfect parents basically saying "well my neurotypical kids slept through the night by 1/share rooms fine/no not to hit their baby brother/eat what's offered etc etc so there's no reason your kids can't"

Telling parents of disabled children that they're shit parents because their DISABLED children don't behave like non disabled children is so fucking destructive.

And it happens all the fucking time

😭

People just can’t see past the end of their own noses, my DC are NT (well one may need assessment we are in very early days) but one has serious food allergies and it feels like all we hear is how we must be over exaggerating it for attention (attention! Any we do get for it isn’t bloody positive), or just outright making it up or how we should just feed them their allergen because ‘they will then get used to it’. People just don’t get it, until they have to deal with it personally.

It's crazy.

My dd never acted out at school. She doesn't SH (that I know of)
She eat most thing a but won't eat ANYTHING out of date.

But that doesn't give me the right to judge another parent who child does the opposite.

My child won't go on holiday but she will go to the theatre or cinema or a gig.

I take joy in those things and envy those that can enjoy a holiday as a family. But do people judge us as she won't come on holiday with us. Probably????

The judgement is the hardest thing. Not all NT are the same, not all ND are the same. But generally, GENERALLY ND need to be parented in a different way to support/accommodate their needs and that can look like "letting then get their own way"
My two ND have been brought up in the same household, with the same expectations etc but both present their struggles in different ways. The eldest internalises until that is no longer possible, then explodes into a panic attack. The youngest has much more frequent meltdowns, often violent, and is permanently in "fight or flight" mode.

Both struggle with school, the youngest most and yes I do worry for their futures although I would never say that to them. The oldest has a goal/plan which I think is achievable, with support and accommodations. The youngest I think will never do a "normal" job so my job is to help work out what IS feasible and achievable and how to work towards that.

"I do believe that is in part down to my parenting as I still have fairly high standards for his behaviour, despite his diagnoses"

I have high standards for my son's behaviour but they are based upon his level of understanding etc. To other people they may not appear to be high standards.

I’m a dino with ADHD. Obviously back then I was classed as a naughty kid who was defiant and rude because ADHD wasn’t a thing.
I learned EVERYTHING the hard way (still do) and I can mask like a pro 🧐 when needed.
I think schooling needs to change. So many kids classed as SEND but really what a lot of them need is acceptance, understanding and to be taught differently.
Having said that, parents also need to realise their children will be adults one day and will need to cope in sometimes difficult situations and environments.
Appreciate severity is key but society needs to stop looking at them as disabled and start thinking of how to adapt.

I think there is a huge misunderstanding of what Autism is and what it isn't. And it's frustrating when people self diagnose because it undermines the credibility of those who do actually have it. My son was diagnosed last year. I had delayed seeking a diagnosis for a year because everyone around me told me he would grow out of it or it was my poor parenting. There were lots of obvious signs but family and friends seemed to focus on his behaviour and mainly his explosive temper and aggression. They overlooked all the other things.
When he was diagnosed MIL said "all kids are different, it's your parenting, he's fine". SIL then decided her DD was autistic despite not being diagnosed or seeking a diagnosis. She said "oh yeh DD masks, she had really bad tantrums". And that's the thing if you haven't experienced it, you just don't get it.
Yes my niece has bad tantrums but she's so much more able than my son. She can go to school without any issues, she can eat, she can go to swimming lessons, she can make friends easily, she can go to Brownies, she isn't pooing her pants or smearing poo over the walls, she goes to sleep at bedtime.

I’ve found judgement on both sides in all honesty. I’ve had judgement for treating my DS “like a neurotypical” and that I’ll mentally damage him from some autistic support groups even though some usual parenting techniques work with him and some have to be adapted.

I do find it quite strange that me saying I think my son's behaviour is IN PART affected by my parenting is controversial. I don't see how that is a controversial thing to say! I'm quite flexible and probably fairly soft when it comes to most things but in terms of aggressive behaviour, especially towards younger siblings I've always taken a hard line (as i think other parents should too, ND or not). I most definitely understand all autistic/nd children are different and I'm lucky in some ways. And I do feel for those who are really struggling and trying their best.

I'm not sure I agree with you. My autistic son never had meltdowns. At the one and only parent support meeting our local health authority ever held I discovered he was the only one who didn't melt down. He fugued instead, when stressed. I could put that down to my parenting, but I don't because I did everything I could in other areas and failed.

I did everything 'right' to help him sleep through the night - every single night a calm routine of bath, bed, story, lullaby, low light, no stimulation, but he bounced out of bed all night long every night. He slept between one and three hours every 24 hours for three years and between three and four hours until he hit puberty.

And I did everything I could to get him to eat but honestly that was a 24 hour job that left me demoralised and frantic and feeling like the shittiest mum in the world, as he withered away in front of my eyes, as others judged me for feeding him the same thing every single day for eight years, because that is all he would accept. He was as he was. We were lucky with tantrums and unlucky with eating and sleeping. Other parents may have the opposite. Autism really isn't down to parenting styles.

I think that you have worded your post really sensitively, tbh.
I have PDA profile, as does my Twin 2 (twin girls, aged 7).
School - after a really collaborative approach and lots of meetings - use declarative language and keep things as low demand as possible for Twin 2. However, she is currently mainstream primary - albeit with an EHCP and extant risk assessment for moderate to severe self-harming and risky behaviours - and there are still expectations placed upon her.
My own PDA profile and a life time of unmanaged, unsupported ways of being have left me at the periphery of society (not going into specificaties here) mean that I, personally, want better for my child.
So, I try to keep things as low demand and low stimuli as possible for Twin 2 AND Twin 1 (who is demand avoidance, but not PDA profile), but I do have behavioural and family expectations of both my children and I don't see that making everything all about them and their struggles to the detriment of my wellbeing as their parent has ever been helpful.

Meant to tag @worrywilma in the above, as I was responding to her post!

I agree with you. I have 3 kids with autism very close in age including twins,now very young adults. Their autism presents very differently. Only one has a pda profile, only two have struggled with depression, only one has had a severe eating disorder, only one has an EHCP…the list goes on. All have needed significant support and significant need has manifested itself at different times.
They were raised exactly the same at the same time.

Would like to say as we move onwards through life to other parents there are glimmers and we are beginning to see the light. It’s bloody hard work but we’re/ they are beginning to carve a way and lives that suit them adjusting to their disabilities after some very dark days. I’m so proud of all of them( and us).Autism is so hard and not something you can neatly package to one side.

Would like to add my kids are massive maskers and looking back I worry that the mental health struggles were due to their autism and needs not being given space( by themselves, school, society and even me). I know I did my absolute best in difficult circumstances so I’m not blaming myself now however it is important to remember that squashing down painful emotions can come at a cost and raising/ educating ND kids needs to be done with empathy and consideration of the huge difficulties they are handling.

@OriginalUsername2 yes to the eye rolling... when DD was going through school non-attendance due to unmet need, we, through solid hard work and very very gradually, managed to reintegrate her by making adjustments like ear defenders etc and by visiting her at school in her lunchbreak. We allow her to come home if she needs it (not just because it was a lesson she didn't like!)

But we just "shouldn't put up with it" apparently. "How will she cope when she gets a job?" Do you think I'm so dense that that hasn't crossed my mind?!

And to the potty training in a week poster, when DD was 2 years and 4 months, I took her nappy off in the morning. She said "No more nappies," and never ever needed one again. The consultant said this is quite common in autistic girls (and I assume some autistic boys, too!)

I have a neurodiverse nephew who runs rings around my unstructured and disorganised sister. She’s the mum - kids always play up for mum - and yet I’ve never once seen her be consistent or follow through on anything. He knows if he holds out long enough he’ll always have a packet of cookies sitting in front of the TV supper.
at ours? Eats at the table, eats the food including veg (have to be done very specifically but I ask him how). Tried not to initially but I said this is the rule.
On one hand I do not think for a second he’s easy. Constantly tests boundaries, looks for exceptions etc. on the other he gets behind the rules / the structure when they are enforced consistently.
there are obviously very different degrees of neurodiversity- it’s a spectrum not black or white - but I do feel it’s become a label for tolerating all sorts of shitty behaviour in some kids

I don't disagree that nd kids often actually need structure, routine, predictability. However, don't congratulate yourself too much that he eats fine at yours, as he's likely masking - just as many do in environments other than home. When your sister brings him home to hers after he's expended all this energy on "doing things right" at yours, she likely sees the biggest fallout as a result. Our dd is very much like this at other people's houses. She then falls apart saying that things weren't the way she normally has them, and that she forced herself to eat things in an environment that she actually finds trigger her sensory difficulties. She explains to me that she doesn't want to "hurt nanny's feelings" for example, because "she doesn't really understand me like you do". This is for a much-loved grandparent who she feels otherwise very safe and happy with. This is in fact what's doing on inside the heads of lots of nd kids. Your sister is definitely not helping herself, but don't underestimate the toll the constant battles have on parents. I hope she has some good support in place, which will help her to deal more effectively with your nephew's neurodivergence.

My experience is that it is easier in work than school.

Your dd will have choices about the kind of environment she works in. She will also have the legal right to reasonable adjustments in the workplace. Access to Work is also available.

This is interesting. DS is also very good at masking. I was often asked - DS2 has autism? Don't you mean DS1? (DS1 has personality traits that many people associate with Aspergers but he is actually neurotypical - just very formal and eccentric!)

The thing is - DS2 really wanted to learn how to mask. He asked me and I taught him. We spent a long time finessing it. I reassured him (and I truly believe this) that NT people mask all the time too, it's just we do it more easily and it doesn't drain us as much) Masking has helped DS make and maintain close friendships, get jobs, girlfriends, participate in the world he longed to be part of but felt so alienated from in his very lonely teens. But... he does get depression. He used to get anxiety attacks too until he began sertraline. Maybe he'd have these issues even more if his life was still as lonely as it was in his teens, before he taught himself social skills and practised them until they were second nature. or perhaps - as your post makes me wonder, that masking is the cause of the stress. I don't know. It's so hard to get the balance right. What is mastering a valuable social skill and what is masking? I find it hard to distinguish between the two sometimes.

This is so true.

DS fell out of the school system at 13, has no qualifications

The few years at home after he came out of school were the calmest and the most enjoyable of his childhood as he just couldn't cope in school, take that pressure away and he could thrive.

I did wonder what would become of him, but he is working, he has found his niche. He works nights which he loves and has recently had a promotion as he is good at what he is doing.

I am aware he could cock it up any time so I am not complacent, but so far so good. The company he works for are understanding of his quirks and let him get on and do the job his way.

Schools are very much a one-size-fits-all environment, whereas the working environment can be far more flexible.

What I find hard is figuring out what is ND driven and needs more understanding and what it would help to have firmer boundaries on. DP and I definitely differ on this as well with him thinking I am too lax and me thinking he makes no allowances for ND and often escalates a situation. I think this is when comments annoy me as I am uncertain myself but with the ARFID I am now confident I am doing the best I can with it so I don't care if other people don't get it