Tell me you're a parent of a ND child without telling me...

[Deeperthantheocean]

Just looking for experiences from others who get it! Being a parent isn't easy but when you have that extra layer of special needs it's a whole different ball game.

As much as you love your dc it really is tough and brings so much extra worry, stress and complete modification of life as you expected it to be. The things you had imagined being able to do with them you can't, the interventions, finding the right specialist school, daily physical and emotional battles, the list goes on.

It's not their fault, they aren't naughty or spoilt, they act certain ways because that's how they cope. So, when integrating with events with NT kids no one realises how we're on watch every second, have to deal with and defuse situations before they escalate, leave early as we know behaviour is going to be frowned upon and basically jist not attend some events etc.

An expert for our dc's particular diagnosis was 'your life from now on will mostly be with others with the same needs' and it's true. Only family and close friends understand, don't judge and as parents we feel more comfortable getting together and can actually relax a bit!

To emphasise, we adore them, they are indeed special and need extra care and we will continue to our best always to support them and they know this. ❤️

So I'll start with a few random examples of how you know someone has a ND child...

Sorry, won't be in to work, turning round, school needs help with my dc at 9.15am

Unfortunately I can't take on your child (childminder) as agreed, I've found out more about them and doesn't fit into the group

Sorry but they can't attend breakfast and after school any more as we can't staff the extra needs

Your dc was upset and rude to my dc, all she wanted was for them to put their shoes on to go outside to play and he said he couldn't so she called him names so he burst out crying and shouted she was mean.

So many things! Anyway, point is to reach out to all of you who don't fit into many conversations here on MN and real life. And a big shout out they you are doing g an amazing job, even though you may think so. Xx

Sorry he can't come to the door right now, he is under his blanket. No I won't tell him now, I'll pass on the message after blanket time.

.I cut the labels out of every item of clothing I buy for my children
.Both of my children have only one pair of shoes each and buying new ones can take weeks
.I frequently bulk buy food items and end up putting them in the foodbank after they are no longer tolerated
.the same song will be playing on repeat somewhere in the house for up to a month at a time a then never again for at least five years
.nobody in my house (except my DH) has had more than 6hrs sleep at a time ever
.my children are nocturnal in the school holidays
Etc
Etc
Etc

First clue I had was a lady who stopped me in the street to say that her autistic child wouldn’t wear clothes either. Mine was wearing only pants and wellies in a rainstorm because nothing else felt right.

Have you had a look on YouTube? Obviously it isn't interactive, but my DCs happily dance along to the Just Dance videos on there.

I can recite all the marvel movies to you if you like....not marvel?.....how about a bit of star wars or harry potter then....still not interested...... ok then it's every episode of countdown so (and yes I mean every episode from the last 22 years)

Don't touch the blanket 😞 please don't touch it

We have lots of china ramekins / small dishes...
Separate foodstuffs.

We have a bunch of crumpets going off (substitute anything else) 'i never liked them '(ate ONLY them yesterday...)

Standing in the rain for 20 minutes while the head teacher holds an umbrella over me as I try and reach/calm my melting down child. Since the rain was moving sideways we were both drenched but I was really grateful for the show of support.

Cooking three different meals for four ND people every day because one only likes a limited selection of specific dry-ish foods, two like the same (wider range of foods) but of those two one has to have certain elements served in separate bowls because if they touch each other then they can't be eaten, the fourth has different restrictions and often eats a random selection of things that nobody else will touch.

Having to explain once more why yes, my child may need to build "resilience", but no, suddenly changing their routine/disappearing to see how they cope without me/otherwise unexpectedly leaving them to cope alone is not the way to do this.

On showing a clip of DD melting down and attempting to self-harm at home "but she's a model student at school, we've never seen anything like this - do you think she could be masking?" given that this clip plays out after school almost every day, yes, yes she might be.

Dr: "Autism isn't my area so we'll just look at anxiety for now". Me: "They have a (diagnosed) ND parent, sibling, uncle and four cousins, plus X, Y, Z behaviours and concerns have been raised by home and school as flags". Dr: "That's not really much to go on genetically, and they seem very happy today, so let's leave that and consider anxiety"

At parents evening: Your child is about to enter Y3, you need to consider secondary schooling now because it could take 2-3 years to fight the LA and get the provision they need. There's one place locally, nothing else within an hours drive.

Your child listens to/watches the same thing on loop hundreds of times. But you don't realise that's unusual because you do that, too, and then end up confused when autism is suggested.

If the clothing isn't the precise mix of colour/pattern/feel then it will be discarded, even if you think it is identical to the one that's just been outgrown.

How do you manage on 3-5 hours of broken sleep a night? Well, it isn't optional. But aren't you worried you'll get sick? ...

Why don't you just send them into the toilets alone? Why do they need to use the disabled loo? (Because they have no sense of safety/danger, assume everyone is their friend, won't shut the door when using the loo, don't sit on the loo properly and can't clean themselves after a poo. See also "hidden disability")

It's 0230 and I'm offloading onto an anonymous forum because somebody asked a question and it turns out I really need to get this off my chest because who can you tell this to in real life without sounding moany (sorry for the long post)?

DD has ASD and ADHD
I thought all children had to have food not touching - carrots in one bowl, cucumber in another etc
Watching the same shows on repeat
Buying ridiculously expensive socks- only ones acceptable
Only tolerated clothes are cotton jersey - no knitted jumpers/ tights/ mittens etc
Stocking up on their favourite food - then suddenly they hate it ..
Having to go to the same holiday year after year , again and again
Watching play dates like a hawk, hovering and constantly getting involved to broker peace ..

Now, I see this stuff as proof of the very high likelihood of my ND rather than DC's... (Been waiting for a couple of years for an assessment 😩 I keep 'accidentally' falling off the list apparently)
Want to know the name of a Pokémon? I can name most. Want to know about a specific technical detail of DC's sport? I know it! If you want to know a random-and-fascinating-but-useless-in-everyday-life fact from a myriad of different subjects, I can often supply the answer. Just don't ask me about any sport outside of the one DCs and I do or anything on popular culture 😂 It's like the more useless outside a pub quiz the information is, the easier it gets permanently logged to recall and weird people out at a moment's notice.
If only I could apply my super power to something useful with decent earning potential!

She’s not trying to be rude, she’s just gone mute because a person is perceiving her too much.

She’s fine, she’s just having some floor time.

She does appreciate the thing you did, she just doesn’t have the energy to produce the right facial expression and tone of voice at the moment

Been up since 3am with him shouting and jumping on the sofa. Will have to scrap some of my plans today.

At the park yesterday the other mums were sat down chatting and I was closely following my son trying to stop him from faceplanting after running down hills too fast, or eating, stones, bark and grass. I can only let him out of his buggy or off reins when he is in a fenced space.

When bringing the shopping into the house i turned around and he was gone and made a run for it.

Got kicked in the throat changing his nappy (he's 5).

Listening to other people bitching about other parents and wondering if they blame your sons brain disorder on your parenting.

The above silence is the sound of no friends calling 😞

Quiet weekends at home are standard….we don’t get invited to play dates or birthdays parties

Aren't autistic children naughty? You child is really well behaved!

We can’t meet needs - nursery. Me - you haven’t met my child and we haven’t discussed his need yet.

Different nursery manager - lovely to meet you Mrs X we don’t have any availability at X nursery. Me - Really? When I spoke to you head office yesterday they said you did which I why I organised the tour. Do you think you will have availability when X turns 3 then. Nursery Manager - No (without checking). Me - what about in September when you have 30 4 year olds leaving to start school? Nursery manager - No (without checking)

Icelands mix and match 10 for £10 deal sees me at the checkout with 10 bags of Alphabites in my basket.

I make the same 7 tea time meals week in, week out and can never deviate from that. Breakfast is the same every day, lunch is the same ever day.

My cupboards are full of the only weetabix (Asdas own) that are accepted, the only diluting juice that's accepted, the only beans that are accepted etc etc you get the picture so I don't run out if there's a supply issue (covid was a nightmare!)

If I get 4-5 hours of sleep it's been a great night.

Totally relate with the buying multiples of the same clothing once you find something that's accepted! And removing all labels...

"She questioned your teaching method and the answer? And rolled her eyes at you?
Sorry about that, but she IS right"

I made a post on social media about the Ella pouches changing. None of my friends understood.

Just going out for a day trip - with multiple changes of clothes of course, in case of water or mud splatters.

Ah yes his school shoes are falling apart and tatty. He refuses to wear the new ones which are almost identical but the right actual size for his feet now.

Cheese sandwiches it is again!

No, I can’t come back to the U.K. for your event. I can’t just “leave the kids with friends overnight”. We only have one set of friends left who haven’t distanced themselves from us and I don’t want to lose them, and anyway DD1 has no friends. It breaks my heart, and hers, but this is where we are…

Mine used to do that as well. Hard to manage in public toilets with more than one cubicle. So (after posting on MN for advice!!- This is 10 years ago maybe) i bought from Amazon one of those radar keys for the disabled toilet. This meant we could be alone in the toilet and the dryer would not be used at all. It was a godsend.

Travelling on holiday in 2 cars for years, a child in each of our cars.
Never been abroad with them as I refuse to inflict the younger child on fellow travellers.
Having weeks worth of a particular food in stock, to be told they no longer like that food.

Playdates with nt kids: the fear it strikes into my heart about the overwhelm and the impact (and embarrassment to me) it will have at collection/ bedtime.

I lie here worrying because I forgot to remind her to put her socks on before bed, because I was maxed out with comforting her after she became distraught that her play date had ended. Now I don't know if she'll be able to put her shoes and socks on today.

We're going away for two nights. I have packed every single combination of clothes I can think of for her. Meanwhile, ds has packed two pairs of pants, two joggers, two tshirts and one jumper.

She told me last night that she doesn't want to go away because she doesn't like things to be 'different'.

I am furious with school because they've just landed 'optional' SATS on all the children (they're 7!) and they failed to communicate this change before implementing it. Dd's performance anxiety was off the scale this week, and she's now stressing about Y3, how different it'll be and she will no longer have her beloved teacher, who really understands her. I don't care that you referred to the tests as 'special booklets' to try to be sensitive. Dd saw straight through those tactics!

I know before the day starts that she will cry today. Perhaps once, perhaps multiple times, but she has cried every single day of her life so far. And because it will be a different environment, I may also get called a fucking idiot at some point. This might be in private, where I feel OK to react calmly and as advised, or it might be in public, where I feel the judgemental eyes of bystanders watching for my reaction. This might mean that I don't react to her as well as I should do.

The junior school's uniform includes a tie. Dd hates the feeling of having tight clothing around her throat. She's already worrying about September.

having people tell you ‘I would never send my kid away to boarding school’

…. when weekly residential school was the only option we had due to their complex needs and meant my child was actually finally educated by people who could meet their needs not babysat at local school.

being told ‘all children do xyz’

• they might- but I can bet not at the frequency, intensity and age that my child does it - not for the same reason

people believing ‘that ‘a good slap’ would sort out my child’s behaviour (Because violence towards a child obviously cures an autistic meltdown??????)

never leaving the house without comfort / sensory / transitional objects that the world seems them ‘too old for’

having a song for all events of the day such as eating breakfast , getting dressed…

the list goes on and on

… if I could ask one thing of people with kids that aren’t disabled it would be ‘don’t judge - what you don’t understand’ - until you have walked a mile in our shoes (always the same ones winter or summer, sunny or rain as only one brand and style was ever tolerated on a sensory level) you really don’t know what you are talking about… so best not to judge how we are managing….

I have 60 packets of quavers in my cupboard

Oh and hearing 'if your child can't swim at the age of 12 it's a parenting failure' (verbatim quote).

Nup- it's dyspraxia, love. I'll show you the bank statements and £600 I spent on swimming lessons if you like.