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

@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.

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.

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.

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.

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 😁😂

@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.

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).

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.

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...)

@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!

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.

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

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 🫣

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.

Hand driers

^^ this
And dreading it when his favourite food suddenly says "new and improved"'on the packaging 😩

I like the constant battle with the LEA

How is it possible to hate an administrative body this much? Fuckers.

My last full nights sleep was 2007.

The last night out with my DH was 2015. We got a phone call to come home as he got so upset.

His favourite phrase is "you don't doooo things like that" he's ruled obsessed and told his Headmaster off when he seen him driving the wrong way round the one way system 🫣

Taking a sandwich apart and examine every tiny bit carefully before it's eaten.

I hate the Titanic with a passion.

Removing imaginary fluff.........

Christ those Dyson hand dryers were such a nightmare when mine were little!

Other parents (and some kids)thinking DD 7 is just mean and badly behaved when she is at a point where she is unable to communicate.

Spending full weekends at home because she is too overwhelmed and burnt out from school to do anything.

Having to constantly explain that people say things they don't mean.

Feeling incredibly isolated.

I see this all the time!! DD reacts to others behaviour but the things she reacts to aren't ever questioned even though they are clearly done to wind her up.

Just to give you all hope, my youngest (diagnosed ASD with ‘quite severe’ communication issues) is now at uni. He’s in the same routine - just in a different room. Still eating pasta, pesto and cheese or pasta and tuna…at least it’s cheap🤣. He doesn’t talk about Pokémon anymore…now it’s Taskmaster and The Beatles!