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

No, a star chart WON'T help.

Yes, I realise I am 'her parent, not her friend'.

As her parent, I know that a star chart will just ramp up her anxiety and make her even.less able to comply.

Thanks for the suggestion of parenting classes! If only I could be as knowledgeable as you are!!!

Spending an obscene amount of time choosing new clothes she needs (checking the seams, waist bands, cuffs, neckline, fabric type). Then never being able to return them because all price labels and internal labels need cutting out before she will try them on.

Protecting 2 pairs of socks because they're the 'safe' socks and panicking when one singular sock can't be found.

Stressing out when M&S discontinue her school shoes. She needed a bigger size and they were out of stock with no view to restock. So spending 30 minutes in the shoe section man handling shoes to see which felt the same weight, had the same sole thickness, had the same inner lining and same t-bar Velcro strap. Wore them for one minute and refused them. Had to find the exact same shoes on Vinted and now having to find them in the next 3 sizes up to last through primary school because trying to transition to different shoes just isn't worth the stress.

Trying to protect her NT sister from her meltdowns. She is often the target when her sister is struggling.

CONSTANTLY worrying that ive missed something, or that theres something else i should be doing. Constantly being on a high state of alert and trying to predict behaviours and mitigate them.

Thats the tip of the ice berg. Shes my world but my god it's so hard.

Wisdom 4+ toothpaste for both our autistic kids here. Thankfully Savers sells it for £1 (Home Bargains stopped stocking it).

That's what he does in school but likes to get the points

The undeniable urge to headbutt parents of nt children who talk in front of your face about how neurodiverity is a new fad.

Just fuck off Megan, fuck reet off.
And take your outdated, unwanted, privileged and completely damaging opinions with you before I mentally headbutt them too 🤣

Before anyone says anything I'm a pacifist and wouldn't ever use violence on anybody (unless it was self defence or to protect someone) but my heck, mentally? I'm like Tom cruise leaping around Oprah's couch just doling out kicks to the uvula instead of goodiebags 😬

Sorry, we won't be able to make it because I accidentally washed DD's hoodie in Bold non-bio washing tablets instead of Sainsbury's own non-bio washing tablets so now the entire day is ruined.

No, we didn't "forget" it was a school dress up day.

Sorry, a family dinner starting at 7pm won't work for us because DS has to be in bed listening to the same audiobook he's listened to every night for the last 18 months at exactly 7.30pm. No, we can't "just let him stay up" unless you want to eat with him screaming and banging his head on the table.

@NoWordForFluffy
thank you for the tip - I'll try that one!

I'm celebrating because my dd (nearly 18) independently used the washing machine for the first time yesterday. It's a life skill we've been working on for the past couple of years.

It's blue and apparently the right kind of mint (for ours!), so worth the £1 to try it!

No, there is definitely a place for violence.

I recall the smug mother on my road putting her head to one side and tutting in a faux helping voice; 'Do you think he would learn to talk if you tried talking to him?' For my non-verbal severely autistic 6 year old.

It remains one of my proudest achievements that she got out of that situation with her eyes still in their sockets.

(FWIW he started talking a few months later and has never stopped since.... he even whitters away to himself in his sleep).

Calling sweet potatoes "pink potatoes" so she'll eat them

The only vegetable he'll tolerate is tinned tomatoes. But, for a long time we couldn't acknowledge they were tomatoes. We just called them "red".

Yeah, she won't eat onions but she will eat leeks. So anything with onions in, she's told has leek in (we didn't start that deliberately: one time we served her favourite leek and potato pie but didn't have leeks so used onion and she didn't complain.)

She won't eat tomatoes but will eat tomato ketchup and tomato pasta sauce.

She can't do tablets so has to have calpol and kids' antihistamine. She's 12 and they cost a bloody fortune.

Some-one got there first but the children in school uniform on dress-up days are not always because the parent forgot. When all the school staff including the secretaries and teachers who have never taught your child know your name!

He's very good looking. Are you sure he's autistic

This! I've been told by more than one person that my DC's cannot be Autistic because they are both "beautiful". How do people not realise what a fucked up point of view this is?

We have an enviably low food shopping bill (and probably scurvy) as nobody but me eats anything besides oven chips.

The closest thing I’ve had to a holiday in years is a trip to the big Sainsbury’s.

Frantic goggling for days because the only toothpaste she'll use has been discontinued... going to try something new. Wish me luck and a lottery win.

Having folders of paperwork everywhere, not job but EHCP related. And suspension related.

Getting "the call" or a teacher coming for "the chat" everyday.

Finding a group I hate more than estate agents- looking at you KCC SEN Dept.

And yy to all PP re clothes and food...

No you wouldn’t and the reason I know you wouldn’t is because of your last paragraph.

Tell me again exactly how I should have parented my non verbal, ASD child with severe learning difficulties and severe sensory issues so that she could fit in with society, my family and school and develop as an individual. Spoiler alert: she went to a special school from the age of 3, needed 2:1 supervision at all times and we always used all recommended techniques with her - makaton, PECS, intensive interaction, Early Bird, Iceberg techniques, etc.

There was not a mainstream activity in London, Brownies included, which would allow her to attend even aged 3 and certainly not as she got older and even with us offering to provide and pay for a trained 1:1 to accompany her.

Posts like yours boil my piss frankly. Just because you were lucky enough not to have a severely disabled child, don’t pretend that those of us who do have brought it upon ourselves by poor parenting and virtue signal that you would be prepared to step up to the plate to give our children even a few moments of the same experience as a non disabled child when it’s clear from your own mouth you wouldn’t have the first clue where to start

Being happy that you spent £10 on food somewhere that your child gave one lick and then refused to eat anymore of, because they almost never agree to try something new so even a lick is an achievement.

The many hours spent between chemist & doctor trying to get meds - they know me by sight now! And then twice as long when he puts on weight & the dosage has to change (he's 13 & growing like a weed)!

The thrill when he's invited to his second ever birthday party that wasn't whole class 💙 Then panicking about whether laser quest will set off his epilepsy (it didn't!)

Oh that's so true here as well. Most of DS's nutritional needs come from vitamin tablets and Complan.

he came home after his year 7 residential telling me that more than half the students came down with food poisoning and added proudly; 'But I don't really eat food so I was fine, mum!!'.

@NorthernChinchilla I'm right here with you in regard to KCC - Absolutely horrendous! 💐

Buying entire boxes of the same kind of pizza in Aldi as that's the only one DC eats, 4 times a week.

Knowing that the same pair of socks have been worn 10 times in a row and not really caring because at least they had a shower and are wearing socks and a clean shirt for school.

Having an excessive knowledge of star wars, all marvel films, all lego films, all lego set reference numbers, Hollywood actors and Saturday night live sketch references.

Knowing that one minute you'll be told to fuck off and the next you'll be told that you are the best mother in the world and given an absolutely massive bear hug. I mean literally one minute to the next some days after school.

Adding lots of additional time to go anywhere as if we don't have a meltdown getting into the car there will be one when we get there involving getting in and out, throwing shoes, hitting and lots of crying.
The joy of transitions! Especially if we're going somewhere DD actually really likes.

I know Diary of a Wimpy kid audio books off by heart.... All of them. There's a lot. Not DDs listen to the same ones on repeat every night and after a few weeks change to a different one.
Also certain TV series, I don't watch TV with them as they're 10 and 12 but I know the storyline for many programmes that are years long 🤣

Tactics to wash hair, brush hair and try and minimise the screaming.

Not being able to walk up or down stairs before them.

Sitting next to beds at nighttime so they can go to sleep. Sometimes multiple times a night. Or of I let the youngest in having a child nearly as big as me try and sleep on top of me all night!

I'm sure there's more and sending love to everyone as many parents are dealing with a lot more than me ❤️❤️

We never have a meal out as we can't get a babysitter.

Hearing “perhaps you just need to be a bit firmer with him then he’ll stop”

it’s a meltdown ffs…. if I tell him off it will escalate!!

Dinner at 1830 promptly every night.

and no fish because fish are our friends. That one lasted four years - he finally caved last week which was an epic win for us.