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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

392 replies

Deeperthantheocean · 24/05/2024 22:41

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

OP posts:
GrandTheftWalrus · 25/05/2024 12:01

ThereAreNoSloesOnThere · 25/05/2024 06:48

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.

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

Veryangryboy · 25/05/2024 12:00

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.

Calliopespa · 25/05/2024 11:57

motherofawhirlwind · 24/05/2024 23:17

Liquidising bolognese sauce, but burgers, Moroccan mince and chilli are served as the recipe intended.

Trying to wash and dry teddy bears in a day so she can sleep.

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

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.

She's 17.

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.

feellikeanalien · 25/05/2024 11:56

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!

WaveChaser · 25/05/2024 11:49

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.

Cheswick · 25/05/2024 11:43

motherofawhirlwind · 24/05/2024 23:17

Liquidising bolognese sauce, but burgers, Moroccan mince and chilli are served as the recipe intended.

Trying to wash and dry teddy bears in a day so she can sleep.

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

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.

She's 17.

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?!

Alalalalalongalalalalalonglonglilong · 25/05/2024 11:42

JFDIYOLO · 25/05/2024 11:14

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.

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.

DrCoconut · 25/05/2024 11:42

@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.

BusyMummy001 · 25/05/2024 11:40

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…

Spendonsend · 25/05/2024 11:31

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)

NoWordForFluffy · 25/05/2024 11:30

sparkellie · 25/05/2024 11:09

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

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

Bunnyhair · 25/05/2024 11:16

JFDIYOLO · 25/05/2024 11:14

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.

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

ErnestCelendine · 25/05/2024 11:16

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

JFDIYOLO · 25/05/2024 11:14

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.

sparkellie · 25/05/2024 11:09

SatinHeart · 25/05/2024 09:26

Yes MIL, I know dry rice crispies is a very boring breakfast. Yes I've offered him milk on them. He always says no, but he'll have a cup of milk alongside.

No MIL, please don't put the milk on the rice crispies anyway, it needs to be separate. He didn't eat breakfast at all for over 6 months, so please don't put him off this one, we've worked very hard at getting back to this point.

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

MagicTape · 25/05/2024 10:45

Pinkywoo · 25/05/2024 10:41

Wishing it was acceptable to print a t-shirt that says "I'm not a naughty little shit, just autistic".

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.

Koalaslippers · 25/05/2024 10:44

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.

Pinkywoo · 25/05/2024 10:41

Wishing it was acceptable to print a t-shirt that says "I'm not a naughty little shit, just autistic".

Caffeineislife · 25/05/2024 10:33

Studying any restaurant/ cafe menu (that your wider family insist on going to so they can "see" DD) for something that will be tolerated. Then taking a packup of beige for DD anyway. DD usually eats the packup.

To then listen to wider family comments on just eating cheese sandwich on white bread, cheddar cheese, biscuits, quavers or wotsits and banana isn't a proper meal. Whilst also having to listen to comments throughout the meal of "DD never sits still, DD doesn't talk to me, DD doesn't like me because she doesn't look or talk to me, why is DD upset?, her behaviour is as bad her cousins (all 4 of DDs cousins have ASD), shes getting as bad as cousins A and B, they used to temper and scream when they didn't want to do things (A and B have ASD with PDA). DD hates busy restaurants and cafes which you insist on going to at peak time. She doesn't cope with new and strange people, yes that includes you MIL who sees her for 40 minutes once a month and make no attempt to connect with her and instead makes most of these comments.

MagicTape · 25/05/2024 10:14

I have a recurring order with Confidence Club.

DC's reception teacher asked me if I'd tried telling her what the toilet was for 🙄

No, she doesn't want her plain pasta made "more interesting" for the love of all that is holy do not do that.

HereWeGoRoundAgain · 25/05/2024 10:11

That unmistakable feeling when you hear "Mrs HereWeGo, can I have a word please?"

I wasn't able to touch my own child except at his (rare) instigation, for over three years. At all. No kisses. No hugs. No hair ruffles. No physical contact. None.

He hasn't been able to say "I love you" in over eight years. And because we didn't know it would be the last time, I can't actually remember that time he said it.

I can judge by eye to the 0.0001 of a millimetre, when an acceptable 'slice' of red pepper turns in to an unacceptable "wedge"!

ArseInTheCoOpWindow · 25/05/2024 10:11

Loves bread but not sandwiches.

Has rejected the perfect pyjama bottoms which were lovely and soft and wearable for years as ‘too long’

Water is lumpy.

CuckooMamgu · 25/05/2024 10:08

We buy 3 different types of toothpaste -
OraNurse (non flavoured and non foaming) for DS2, Aquafresh Splash (strawberry flavoured) for DD, and Oral B for everyone else.

i cook 3 meals every day - DS won’t eat noodles, pasta or rice so lives on potato shapes or bread.
DD won’t eat potatoes or bread so lives on noodles or pasta. Neither child will eat meat unless it’s smooth and beige.

I buy 4 boxes of Coco Pops a week as it’s a safe food when DDs too overloaded to eat anything else - which is most school days!

We use 12 x 4 pints of milk per week as DD drinks nothing but milk.

I spent £15 per week on juice as DS drinks a specific brand and it’s the only way to get Spatone into him - he won’t take any other iron and he’s anaemic due to limited diet.

Last week I cried because DDs list of foods she’ll actually eat hit single figures.

motherofawhirlwind · 25/05/2024 10:07

NoWordForFluffy · 25/05/2024 09:39

I'm not the one who takes them to the dentist, but DH has never said that the dentist has asked / commented about the toothpaste choice!

Edited

She's just has braces on so might be somehow related to that? (and now not sleeping as the braces feel weird.... I did try to discuss this with her beforehand) Will ask for more info!

MrsTulip · 25/05/2024 10:06

Constantly sending emails because paediatrician refuses to give a diagnosis and school won’t accept a private one ( they don’t legally have to according to SIASS)
Taking 45 minutes to put on a pair of socks
Singing / playing the same song on repeat for the last three months and refusing to wear headphones