Do parents of 'neurotypical' children really understand?

[WindmillsOfMyMind12]

My son is 4 and is awaiting an assessment for adhd. I'm wondering about autism too but it's very mild if it is there. Although we haven't had the official paediatrician diagnosis yet, other professionals have said yes, it's adhd.

As a primary school teacher, I've taught many neurodiverse children over the years but in no way did that prepare me for having my own child with very challenging behaviour. Dh and I can be so exhausted sometimes. My ds is bright, funny, loving and totally gorgeous but he goes at 100mph, he's impulsive, reckless, highly emotional and has very little concept of risk despite our efforts. We have to be one step ahead and on it all the time, in all situations.

When we're out, I often feel on edge, especially in front of other parents. I feel like they're judging us if ds's behaviour isn't as it 'should be'. Part of me wants to say, my son's got adhd and we're doing everything we can but his behaviour can be unpredictable. It doesn't stop me going to different places with him as I feel like he needs to have different experiences to learn how to adapt but I can be a nervous wreck sometimes!

Now I have a 'neurodiverse' child of my own, I feel so much more compassion and have greater awareness for similar children and their parents. But I do wonder if parents of neurotypical children make judgements? Do they get it at all? Could be that I'm just insecure in my parenting skills with tackling adhd but it can feel like other people judge. It feels like society isn't as 'inclusive' as it could be sometimes.

I have 2 ND children and one NT child. The NT is the youngest.

Yes I understand and I believe most parents regardless of exposure know how to practice empathy and compassion.

Please try and not think about it, focus on your DS and keep being the loving Mum that you are. He's still very little, you'll find your groove.

I love this!

wizzywig that’s a really hurtful comment.

I’m stressed because of constant meltdowns, severe separation anxiety meaning I can’t be alone for a minute, mental health issues, emotionally based school avoidance, situational mutism, part time school timetables, children hurting themselves and others in meltdown then feeling suicidal about it, and wondering what their future is going to be. I’m stressed because I struggle to work and meet their needs at the same time.

You’re making huge assumptions. Toilet training is an issue for many ‘high functioning’ autistic kids. They may get qualifications but will they be able to use them? Will they be ok in life, have relationships, friends, a job (which aren’t the be all and end all but for their well-being…), will they live independently?

And the world doesn’t cater for them. They just expect them to ‘learn to cope’ in a world that doesn’t meet their needs at all.

I’m not comparing or belittling your difficulties, please don’t make such assumptions.

Mine too - and spent time in hospital due to mental health issues due to not being diagnosed probably

@wizzywig being able to talk does not mean a person can communicate properly.
Asc is a communication disability. Being able to form words has very little to do with communication. Imagine being able to talk so people assume your 'fine' but in reality you cannot process, understand and find the correct words. You feel a certain way but your so trapped inside yourself that you can't find a way to cope or to ask for help. Yes this is an issue for those who are profoundly disabled too but those who can talk are expected to get on with it and so so misunderstood.
Imagine being put in a nurotypical world because you can talk and use the loo but that world makes you shit scared every single minute of every day and night.
Imagine being able to do something one day and the next day that ability has gone. Then it comes back and the next day something else goes, but your 'fine' because you are almost NT.
Imagine being told your naughty because you can't tell people how scared and overwhelmed you are but you look like all the other kids in the class so why can't you just grow up.
Imagine feeling so trapped in this world dying is the only way out. But you get gcse's so you know be greatful.
You may be able to live alone but it takes every bit of everything you have to survive.
Functioning labels mean nothing.

I'm not saying people who are profoundly disabled do not suffer, as do their parents but 'high functioning' people also suffer, just in different ways.

It's not shit life Olympics. There will always be some worse off than you; doesn't mean you can't find your own personal circumstances challenging. You don't sound very compassionate to others.

But everyone talks about neurodiversity, meltdowns, ADHD, etc. The realities are constantly talked about in any parenting forum.
When did you last see parents talking about changing the nappy of a 16 year old in a public toilet? Or simply the difficulty of getting out of the house? The challenges are totally invisible.

No.

I have a DSS with LD, ASD and ADHD and my friends etc all view his behaviour in the same frame of mind they do their own kids - he’s a toddler mind in a teenage body. They either expect too much of him or too much of me when I struggle with it.

This is true too.

For anyone who does care about changing nappies for 16 year olds after reading pps post, do check out 'changing places' its doing a lot of work to raise awareness and get more facilities in place.

@wizzywig Do not be afraid to post; your feelings are very valid and we all have those ‘grass is greener’ moments. I was just pointing out, that HFA also comes with it’s own challenges. Life is very restricted for us and we’re exhausted but everyone thinks our DC are ‘mildly’ affected because they are high functioning. It’s not the case .

Now I have a 'neurodiverse' child of my own, I feel so much more compassion and have greater awareness for similar children and their parents. But I do wonder if parents of neurotypical children make judgements?

Well you were a person who wasn't a parent of neurodiverse children... before you had children. Did you make judgements?

Some parents of nt children will judge. Others won't. It depends on what kind of person they are, but also on their awareness and experience. It's hard to really deep-down fully empathise about something you have no experience of.

Thanks, I know about the work they do, very worthwhile.
But very tough anywhere else.

Well, no. I don’t understand. I haven’t experienced it. Same as I haven’t experienced many many things and can’t relate. Racism. A plane crash. Winning the lottery.

What is it that you want from others?

I try hard to be inclusive. I work at teaching my kids to be kind and inclusive and understanding. I don’t stare or judge others, I keep myself to myself. What is it that you think “understanding” should look like?

@sandgrown absolutely. I'm not sure when we'll get the appointment through. I'm hoping by the end of the year. It's been 4 months already since the referral was accepted. As in interim, we've been put on a programme called Triple P. We're just fortunate that ds goes to a school nursery (a school I used to work at) and the senco has been great and really put the wheels in motion. Ds isn't due to start school until next September. He's only just turned 4. I really hope we can get a diagnosis by then but who knows.

The difficulty of getting out the house isn't exclusive to your childs functioning level though. Those of us who are supposedly "high functioning" have the same issue.

Could i please ask anyone to respond.
We have an asd 11 year old boy and a neurotypical 9 year old daughter. We also have a 2 year old boy i am so frightened he will also be asd. Our older boy is loved dearly but the amount of work each day for all tasks etc is completely exhausting and often overwhelming. I worry how we could cope with it again. I worry that its something that we pass on to boys. Has anyone had just boys with autism. Thank you.

I don’t think any of us understand, but that doesn’t mean all of us are judging you!

I know so many parents of SEN children that if I see “poor behaviour” I assume SEN. I reserve my judgey pants for obvious poor parenting, like smacking or swearing at your child in public.

Only one if my three boys - the eldest - has asd if that's of any help.
Have you any concerns about your two year old other than having a brother with asd?

No, generally they don't understand and I've learnt not to discuss my child or parenting with parents of NT children because I've had comments like:

Oh, we're all a little bit autistic, aren't we?
Have you tried (insert bullshit suggestion here like religion, sticker charts, supplements...)?
Give him to me for a week and I'll sort him out!
He doesn't look autistic!

I've been frozen out by so many of the other school mums (after a couple of incidents that make perfect sense to an ND family but not to an NT one) that I dread pick up and tend to arrive as late as possible.

As a parent of kids with severe LDs I struggle to understand why those parents who have kids who are 'high functioning' are so stressed. Your kids are toilet trained, can speak in sentences, get qualifications, that's amazing

That's your own problem. If you were actually interested, you could understand instead of making silly, ill thought out comments. 🙄

We have a child with what some would call high functioning autism and we are also the guardians of our nephew who has what some would see as ‘the other end of the spectrum’. Neither is easier, they just have different issues. Life can be stressful with both.

To be honest, I’ve stopped caring if people understand and just get on with our lives. I find people that say they don’t understand things are usually being goady arseholes. I don’t think anyone can understand fully until you’re dealing with it, which is understandable but coming out will goady shit, well those people aren’t worth worrying about.

The truth is society has never been “inclusive”. Even today the term is used so loosely and means “trying” in my eyes. I’m not just talking about neurodiversity, but diversity and “difference” in all its forms.

unfortunately it takes more people to say “I understand you because I have been through it and/or I have seen it” and these people become allies.

I have a neurotypical child who was mute for the first part of her life and that was absolutely nervracking as I didn’t know what was wrong and I found myself either getting frustrated at the situation in public or over explaining to everyone why my child appears “rude” - then one day I realised I am doing my best and I spent more time with adults that would go along with her being mute through high fives etc as opposed to those that were judgemental. As parents we will go through moments, whether our children - neurotypical or not, of absolute worry for them - especially if they fit into one of the 9 characterises.

I will not know what it’s like to be you, but I can empathise. In the same way that there are challenges in mine and my dds life that you may never understand but could emphasise.

One thing I do hope is that with this influx of awareness of neuro differences, that parents and schools and work together to support our children who will become adults.

It sounds like you are doing everything in your power for your child and I really hope society changes x

I don't understand- I sympathise as i would do with any friends who are struggling and offer to help when i can.
i struggle with not distinguishing different levels of autism though - I have a nephew with dyspraxia and autism (previously diagnosed as aspergers) - and i know it was difficult for my sister - but he is now a graduate , working, living independently and a good group of friends - i have another friend with a non verbal son who has diabetes - i sympathise with my friend more than my sister as her entire life is dictated by her son .

I find it a worry as I don’t think my son will ever live independently but I also doubt he’d ever qualify for any sort of supported living. He’s “high functioning” but effected by asd enough that he’s in a special school in a class of 5 with very high ratios of staff, one teacher and two TA’s for the 5 kids. We don’t qualify for any social care support so won’t be assessed when he reaches adults as adult social care now only assess children turning 18 with ehcps if they are already in receipt of social care from childrens services. My “plan” is to try and live as long as I can but my fear is without support he’d either end up in prison or dead

Wow, so now we're dividing mn users into 'my life is harder than yours because my children have ''x' and you can't possibly understand' sections