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

A draw full of ramekins to stop food touching other food

shoes buying nightmares. She only has one pair of acceptable shoes at the moment

clothes buying in general. absolute nightmare finding acceptable things in the right colour / feel / length etc.

no play dates / hanging out with friends. She doesn’t seem to mind but it makes me sad. No birthday party invites, struggling with what to do for her birthday. Social things in general.

for the love of god and my sanity, make no change to the morning routine. Otherwise we are in for a rough ride.

Watching the same tv programmes over and over
refusing to go to school
restrictive eating
no friends IRL

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".

As in..."Would you like red pasta" Or..."I'm just nipping to the shops for a tin of red"

I can name about 85% of Pokemon by sight and can identify about 50% by the sound they make without seeing them.

I can identify roblox games by their music.

I can identify her favourite youtubers just by hearing their voices.

I've heard the same playlist of over 100 songs from her favourite show so many times I know exactly which song is coming next and can identify the season it came from.

If any of this ever comes up on Mastermind I'll ace it!

To be sooooo excited when he branched out to a slightly different version of the same song by the same artist. Looking at you fucking wellerman

"There once was a ship that put to sea..."

I've been there and feel your pain!

Yes of course I can theme your birthday cake as the Mongol invasion of Afghanistan

Starting the day at 2am or nor not going to bed until almost 11pm.

Having to stick to The Routine down to the minute on a nursery morning - quietly bricking it about school in September.

Mushrooms with EVERYTHING 🤣

Getting used to repetition.

Learning not to pay big money to get in places/for blocks of sessions because chances are we'll end up leaving early or not going in at all.

I bought a giant tea light holder that's like an old fashioned lantern this week, specifically to house his "collection of outside things" so I have all my bowls back 😀

Having 3 of the same jellycat bunny that he holds all day every day because if we lost it the world would quite literally end.

Food is hidden in the car and various other places as they'll eat it all if it's stocked in the cupboards.

Spending £40 in primark on endless sizes and styles of underwear to get the 'right' ones.

Paracetamol and knives all hidden. Sometimes they've come to work with me when I've not had chance to drop them in the car.

We did potty training for two years.

Oh I forgot, reading Winnie the pooh every night for about 2 years!

The heart sinking feeling when you do the weekly shop and see "New and improved recipe" on one (or more) of your child's accepted foods. You know you'll be wearing it later or the floor will or the wall...

The anger at yourself when you drop your eye from them for one second and they are halfway across a field/doing something dangerous/have escaped sight. My son runs everywhere. He is fast. He sticks to a route (we call it stuck in his loop) until suddenly he'll break from it...and that's when I start running!

If we haven't eaten chocolate cheerios at 6:25am and caught the 7:05am bus even though there are three later ones that get you there on time, we're just not going to school.

Going to McDonald's every night because the only food he will eat is plain hamburgers (lockdown was awful for him, he barely ate).

Having to buy soft, long sleeve tops and him refusing to wear a short sleeved T-shirt or shorts, even in the hottest days of the year. The sleeves and collar of said long sleeved tops being ruined by constantly being chewed.

Just being grateful he has developed his speech and language, ignoring the looks from other adults that he has an American accent.

Constantly looking for ways to help him regulate, spending every last penny I have on anything that might be helpful to him.

This is just like my son. He has a little run where he runs back and forth over the same ground what feels like forever taking small steps, then suddenly whoosh he is off.

I forgot to add taping the fridge and freezer shut to my previous posts, although I'm starting to think some NT kids need this judging by my older child and his appetite.

We didn't invite you because we thought it might be too upsetting for him. (Various people about different events)

You're not a good fit for this class. Maybe try again when he's older. (At a sensory class)

He's very good looking. Are you sure he's autistic/ I think you're imagining things/ I think you're obsessed/ I'm not sure you know what autism (said to me by a pediatric nurse, public health nurse, psychologist and doctor)

What's wrong with him. Why can't you get him to sit still. Why is he spinning. Why can't you control him. We wouldn't allow that in our house. Oh my god I'd be mortified if my child behaved like that (various Karens)

He doesn't know how to play properly. He's a weird aggressive child who's disrupting the other children. I dont want to frighten you but I get bad vibes off him (said by a creche worker on his second day. I removed him immediately)

I'm Sorry this is a quiet group for mothers who have had extreme difficulties. You dont really fit that criteria (I had a high risk pregnancy, baby had surgery before and after birth, I had a third degree tear and my mother had just died,)

The list goes on.

The looks I get when in public with DS

He’s not being naughty and I’m not a lazy parent for having him in a pram (comments like “he’s too big to be in a pram”)

Asking at breakfast ' What's for dinner' every morning for the last 18 years and sausages wont do. Sausages rice carrots and broccoli then not changing that for the day.

Can only wear socks from new look once because when they're washed they're "too small"
So we spend ages looking for men's sized socks in fun designs for her, so they still fit once washed!

What happened to that t-shirt/ipad case/toy/glass box/crayon/pencil/stylus/candle etc? He ate it.

We home educate.

What’s that bruise/wound? Self harm

What’s that banging/hooting/explosion/screeching/hissing/growling sound? It’s him.

We aren’t going to make it to X today, sorry for the short notice- I’ll still pay for the session of course.

Oh yes this re clothes.

Mine wears his puffer jacket year round. Even when we were in Crete- in the summer.

He also can't stand 'hard' clothes touching his skin. Like his school shirt or school trousers. So in a fit of despair i spent the gift money my parents gave ME for Christmas on £300 worth of so-called 'supersoft' thermal underwear. Its 'itchy' and untouched. I kept trying before giving up and sending the lot to the charity shop. (Too late for refund).

@motherofawhirlwind

"Searching out non mint toothpastes and mouth wash with the right amount of fluoride, multivits that don't smell funny, and having to give ID to collect her prescriptions."

Oh god the toothpaste debacle!
Dd will only use Wilko's kids' toothpaste because it's the right flavour and is blue. We have a whole drawer full of rejected toothpaste.
Thankfully we did discover early on that most toothpaste above toddler age has the same 1450ppm flouride as adults' toothpaste!

Or the recipe changed slightly. Which seems to be a regular thing these days. 😩