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

One child needs as little clothes touching as possible, the other needs as little skin showing as possible.
A tiny drop of water needs a change of clothes.
Picking water bottles based on resistance to chewing and acceptability.
Putting socks on hands after nail cutting as now fingers feel wrong.

There are loads available!

https://www.etsy.com/uk/listing/1708718553/autie-not-naughty-autism-positive-kids?click_key=4d1d2ed22d1e305bdd8e68abddff92614629180a%3A1708718553&click_sum=597076fa&ref=related-1&frs=1

https://www.amazon.co.uk/Naughty-Autistic-Autism-Awareness-Rainbow/dp/B09WKQVT48

For a start.

I feel this. My DS has dry weetabix! And only drinks water.

I'll just say this then leave as I don't have this experience - our local cafe where we go a lot has the kind of handdryers that sound like an airliner landing next to you. I've heard screaming coming through into the cafe.

Now if I see a parent asking where the loos are I'll casually say 'just so you know, the hand dryers are super loud.' Quite often the thanks are heartfelt.

When the people you email most are school and the ehcp team - usually to point out their incompetence/illegal activity.

Thank you for your service. 🙏🏻 This will have saved so many families untold horror and misery.

Dry <whichever cereal is the cereal of that time period, never to be eaten again once not in favour> and only water here too!

We've spent sixth months mentally preparing for summer clothes. We are now in summer clothes. We need to start our prep for winter clothes ready for october.

(He cant just wear what he likes as he cant regulate his temperature and he diesnt feel hot/cold, even when he is hot/cold)

Have a larder cupboard full of a particular brand of instant noodles and three boxes of the most rank breakfast cereal… because that was all they would eat three months ago…

@motherofawhirlwind we had Chinese pancakes when DS was young. He'd eat them but not egg/omelette! The only difference was a drop of soy sauce. He would certainly be diagnosed with ARFID nowadays.

If I see a parent with a young child I always ask if I may use it. It upsets many NT kids too. Most people really appreciate the offer.

DC also can't stand mint flavoured toothpaste. Curoprox toothpaste, various fruit flavours (green apple or apricot + peach very nice) = toothbrushing without a fight. Life changer!

At the same time favourite ice-cream flavour - mint and choc chips. How?!

Despite having an EHCP I still go on school trips with my child. She's doubly incontinent so still in nappies...

I have barely slept since she was born, her sleep is awful.

Having to watch Balamory, Fireman Sam, Justin's House and My Pet and Me. She's 16 and I keep having to explain who the real people are and that whilst the CBeebies presenters are real the characters in Fireman Sam are not.

Also having to explain why we can't just find out where the Newsround presenters live and go and visit them. She is not at all convinced about this. She likes them so they would like her and want to be friends with her.

The upside of this is that she really enjoyed our holiday in Mull!

Gosh, as a parent who has not experienced ND dcs that final comment really hit home.

I was thinking well we all do that sort of thing … when they are two.

I realised very clearly the exhaustion involved in another 15 years of that level of parenting.

I was running around the neighborhood in my pyjamas and slippers at 8am this morning as my husband had accidentally left the door unlocked and my son took off during a meltdown. He's ok, I managed to get him home, but not before another mum from school had seen me standing in an alleyway pleading with a bush (that he was hiding behind) in my PJs.

I have no interest in football but can list all premier league teams, their grounds, their top goal scorers, when they were founded, where they finished the last few seasons etc,etc.

I seek out the least scented cleaning products and have windows open for hours after cleaning, but he can still smell it and it still makes him mad.

I have a huge stash of The Socks in current and larger sizes.

I have about 3 radar keys to avoid this. Always get the looks though when I take her in there.

Dreading each visit to the barber. Luckily we have found the most understanding and patient barber, he too a parents of a ND child.

Spending ridiculous amounts on clothes that all look and feel identical. Having to shoehorn my son out of clothes as the thought of changing outfits is challenging

Oh yes the looks. I have a friend with an apparently mobile older teen, but she has a disabled badge. This is mainly because he is a bolter and panics in carparks and can't be too far from an exit or entrance as she needs to physically manage him. (He's alot bigger than her). The abuse she has suffered at times.

Our local tesco has a sign on the disabled toilet saying 'Not all disabilities are visible' and tbh I am so grateful for that and other signs like that. It might make someone stop and think (although I know often it does not) but it's so welcome.

The other super welcome thing... the sunflower lanyards for use at airports. I have had great experiences at Heathrow, Southampton and Gatwick with these. The staff clock it and ever so quietly and discreetly let us jump a queue, or open up somewhere for us. In our experience it's done just so kindly and without fuss. The one time it went a bit haywire was going through the electonic gates where you put your passport on the reader. DH, DS2 and I were through and DS1 could not figure out the instructions at all. The staff member got impatient with him- even though he had the lanyard and i was standing opposite but outside the gates asking 'Please help him- he does not understand the instructions'. He got quite distressed. But usually the staff clock what is going on and help him.

Standing in the kids’ clothing aisle, running my fingers along the inside seams of the clothes

Feeling guilty when I eat a meal with a salad, or several different vegetables.

weighing up the relative importance between brushing teeth, spf, and getting to school on time on a bad morning

I have seived baked beans.
"Hello this is SB737, back again for another 386 days in hardcore Minecraft." I mean, what is hardcore minecraft? No one ever manages to tell me, but it must be good.
The meltdown as I ban youtubers for swearing.
20+ times tables known off by heart and recited as regulation.
The same songs, over again.
No, Darrell Rivers is not real. Neither are TV programmes unless they are a documentary.
The only acceptable drink is Aldi lemon water in the sports bottles. I feel I am winning at life as before it was Shloer red grape.

I see your wellerman, and raise you wellerman, but by Mr Farts. Which is EXACTLY what it sounds like it might be.

DS is going to uni this year, after several gap years. We have had 6 visits so far, with another 6 planned, so he can walk all the local roads, choose his grocery store, pick his park bench, ride the bus into town etc etc. He already knows which room will be assigned to him and has permission to put a bird table in the garden.

I have to make 2 separate dinners every single night of my life and have done for over a decade now. He has his dinner first, there's a list of about 5 things at most that we rotate, then once that's done, I wash up the pans etc so I can start on dinner no.2 for the rest of us. Its so time consuming and exhausting.