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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:
Jemimapuddleduk · 25/05/2024 15:50

Hand driers

Jemimapuddleduk · 25/05/2024 15:49

I know the exact number of days until the end of term, our summer holiday, October half term and Christmas as I am asked to work it out multiple times a day.

I have to calculate the number of miles and estimate of time taken to get anywhere before we get in the car.

I worry that they may discontinue the strawberry milk teeth toothpaste as it’s the only one tolerated.

I panic if we forget the yoto player if we are staying away from home. Ds will only sleep with music on (very loud).

I have now accepted that ds does not get invited to many or any birthday parties and I am at peace with this now.

I am an expert at inserting suppositories as this is the only way ds can poo.

I am fiercely protective and will move mountains to make things easier/work for my ds.

I have also been asked why we are using disabled toilets. Ds only got out of pull ups this year (age 9) and needs supervising as can’t clean himself and is terrified of hand rises.

Sendinsanity · 25/05/2024 15:43

My 9YO has had the same ham in her wrap for lunch for the past 4 years. Tesco slightly changed it so I didn't mention it and just put it in. She wrote me a note telling me she wouldn't eat her wrap as the ham tasted funny 🫣

ChristmasLightsLover · 25/05/2024 15:42

@Treesaleaving Yes! Years of sieving Heinz chicken soup to remove the 'chicken'...

TeamPolin · 25/05/2024 15:34

Know FAR more about the U.K. rail network than I ever wanted to.

I was grilled with a series of extremely specific questions about pylons at 6.28am this morning.

I have 4 identical replicas of a beloved fidget toy because only the one with the 'right' colours is good enough and I'm terrified the original will get lost.

I'm locked in a constant battle with the local education authority about DS's secondary transition.

ChristmasLightsLover · 25/05/2024 15:10

@motherofawhirlwind I have been blending tomato sauce for 16 years. We have been eating Lloyd Grossman tomato garlic sauce for I don't know how many years, blended. I buy it when it's on offer, in bulk.

When we all get to the pearly gates, there will be a special aisle for parents of ND children. We get a pass. We collect £200. We pass go!

ChristmasLightsLover · 25/05/2024 15:05

You might be nearly 16. But you need to tell us who you are going out either and where you are going....

Why? Because I said so...

(And you get easily led and have been slippery with us previously, and double down on the defensive and get confused when you're lying to us...)

SusannahSophia · 25/05/2024 14:47

Being delighted to hear that Amol Rajan is on Doctor Who tonight. DS’s two obsessions in one, quizzes and Doctor Who! He’s 24.

motherofawhirlwind · 25/05/2024 14:41

Calliopespa · 25/05/2024 11:57

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.

God knows why, but that made me cry - thank you for realising and saying it. It is, especially when she wasn't dx until 15 and seems fine on the outside (super masker).

Phineyj · 25/05/2024 14:40

@unlimiteddilutingjuice I think we may have similar children.

We had the only hairstyling/bushcraft party in the year group...yes simultaneously.

BIL asked (and received) for a dustbin (new) for a birthday once "to keep things in."

DD has for various birthdays requested crutches and a walking stick (not received and no not needed...would have got her a dustbin if she'd wanted).

Commiserations to those of you dealing with the food, clothing and shoes restrictions.

WhenTheMoonShines · 25/05/2024 14:36

Hair washing produces screams that rock the neighbourhood.

I had to learn how to run because “walking” is not in DC vocabulary and is far far too slow for their liking 😁😂

BreedingHeifer · 25/05/2024 14:10

We went to Subway for a sandwich earlier. He always has vegan cheese and pesto. They didn't have any vegan cheese and they 'don't do' pesto any more. I braced myself for the disregulation, but he managed it so well, despite being really thrown off kilter by it. I was so fucking proud of him.

neverbeenskiing · 25/05/2024 13:32

ArseInTheCoOpWindow · 25/05/2024 13:16

To know every single thing about Taylor and her bloody cats.

But not to have read any of it.

Solidarity. I know far more about the life and work of TS than I do about any of the things I actually enjoy/care about.

ArseInTheCoOpWindow · 25/05/2024 13:16

To know every single thing about Taylor and her bloody cats.

But not to have read any of it.

Carebearstartrek · 25/05/2024 13:10

Asked the same questions, at the same time every day. Being able to recite the alphabet and sing numerous songs without being able to have a conversation.

ArseInTheCoOpWindow · 25/05/2024 13:07

BusyMummy001 · 25/05/2024 13:05

@TheHouseElf similar here - though now we are 19yrs in, we’ve broadened the menu to about 7 items and we all have those together in rotation… but when they go out - or DH and are go out - we go absolutely fkn crazy in restaurants. It’s the only way I can get Thai food!! DH travels a lot, so it impacts him less, but I truly could not eat another pasta bake as long as I live.

Same here but pasto pesto.

BusyMummy001 · 25/05/2024 13:05

@TheHouseElf similar here - though now we are 19yrs in, we’ve broadened the menu to about 7 items and we all have those together in rotation… but when they go out - or DH and are go out - we go absolutely fkn crazy in restaurants. It’s the only way I can get Thai food!! DH travels a lot, so it impacts him less, but I truly could not eat another pasta bake as long as I live.

TheHouseElf · 25/05/2024 13:02

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.

ODFOx · 25/05/2024 12:52

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.

AmbivalentCamper · 25/05/2024 12:51

Fooshufflewickjbannanapants · 25/05/2024 07:54

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

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

Treesaleaving · 25/05/2024 12:49

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.

Theothername · 25/05/2024 12:20

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

ThereAreNoSloesOnThere · 25/05/2024 12:20

GrandTheftWalrus · 25/05/2024 12:01

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

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.

Seasidesavvy · 25/05/2024 12:14

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

Mouk · 25/05/2024 12:01

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