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

I was diagnosed with ADHD at 46, my autism assessment is coming up soon. It is useful in terms of employment protection, or understanding and help (which I've been able to get from people like HMRC and the DVLA). And also very good for understanding yourself, and forgiving yourself for the things that people criticised you for

Hunting for the Special Pants™️ for child 2 that don't have an annoying waistband and buying the same exact school trousers for 7 years in bigger sizes for child 1. (Thank fk they kept making them 😅)

Getting home from work absolutely shattered and getting a surprise hug! Yay! Followed immediately by a detailed Fortnite new season monologue, that I can't really take in, but I do my best. 😂

Deputy head, who is also the SENCo

No, I don't want to support an EHCP application because we know your DC has the IQ, he's not stupid. He just needs to focus.

DC has ADHD. And quite severely. Yes, he's not thick, he can sit and talk ALL day long about the things he knows to prove how smart he is. BUT he has a neurological brain disorder that means he can't focus. Demanding he focuses for lengthy periods of time to write essays is not doable for him because his disability literally prevents it.

This constant battle with the school SENCo is a draining process, because she refuses to try to understand the condition he has. For years she obstructed us trying to get us diagnosed but as usual he was just labelled 'naughty' and that I was just looking for reasons to excuse his behaviour.

My mum: Can't you keep DC under control? People are staring
Yeah thanks for the help & support mum 😫

I cooK fish fingers on Christmas Day!

Not 7.04.23 seconds lol 😆 Our LO has countdowns and goodness forbid if it's a second too soon! Xx

Yup! Sorry we have just them calm and any extra stimulating will result in hell for us! Xx

Love it! ❤️

I hear you. My DD had rules around times around eating. I ended removing the batteries from all our clocks to try to disrupt this as it was a struggle to manage

Aw yes it is, always trying to predict to avoid the catastrophes! Xx

Sorry your son can't play football after school anymore unless you come, with your baby in the pissing down rain to calm him down when he gets overwhelmed.

Sorry your son can't go on school trips anymore unless you accompany him.

Sorry, we have put your son on lunchtime exclusions because the other children have worked out what phrases to say to make him explode and we can't cope. Totally illegal I might add and the autistic society informed me he was being discriminated against because of his disability.

What magic did she do??

Sinking a couple of glasses of wine too many on a Friday night out of sheer relief at having got to the end of the school week, then spending Saturday wracked with hangxiety about how they are going to manage after you are gone.

Mint choc chip isn’t ‘spicy’ like toothpaste 🤣

"Your DS can no longer attend the Christmas performance because he didn't be quiet and sit down after being asked a number of times during the rehearsal".

Year 6. Diagnosed ASD and ADHD, has an EHCP. He was so upset, but them's the breaks.....

I could've literally written this whole post myself word for word

My MIL renovated her box room, now has a lovely single bed etc etc. My daughter is currently asleep on the guest room floor with us because that's where she always sleeps. I can't get in or out of bed without treading on her!

I know all children are different, and some will always have really difficult struggles in life. Diagnoses seem to differ and there are words like 'high functioning' and 'Aspergers' which seem variable - for those of us lucky enough to have children able to attend mainstream school (despite all the accompanying difficulties) I do think there is scope for amazing changes between early primary and late secondary. Many of you with younger children will be amazed at how much they will improve.

DS is 16 now. I am part of a support group with lots of kids similar ages, and my sister also has an ASD son now aged 23. So I have seen a lot of children develop over time. Not those with really serious needs, but all with social and emotional challenges, plus some with physical ones too.

My main takeout is that my support group (most with older kids) all said how I would be surprised at how much DS would develop over the ten years or so between early primary and now. And it's so true. He was incontinent, he was violent and aggressive sometimes, he had multiple meltdowns. He was disruptive at school. He was mostly fine at home but we knew how how to manage things. I dreaded the phone ringing when he was at school.

He is now sitting his GCSEs and is a role model son. He struggles academically and socially, but tries his best and 99% of the time is the easiest child. Occasionally he gets a bit upset and you can't reason with him until he calms down, but mostly he is a joy to be around, and I would never have imagined how great he would be now, ten years ago!

So please don't panic, things can improve more than you would ever imagine! Despite all the shit situations you will find yourself in due to ignorant other people. Our kids are fantastic!

Today:
Huge meltdown because shop did not have a 'little bag' (dimensions unknown to anyone other than her)
scooter went flying twice. This was quickly followed by another meltdown because I wouldn't let her buy a bear she already has 3 identical copies of.. reminder not to attempt shopping for a number of months (her idea she wanted to go).
Cold spaghetti for tea out of a packet awful smell but woe betide any smells coming from anyone else's food.
Run down of the day/week ahead a number of times
3 items arranged in a plate in an order - upset because the biscuits tasted old/she was 'off' the other items (they were fine)
Has only just gone to sleep despite being up from 6am and up 3/4 times a night just waiting for her to get up beforehand I go to bed as I know how it goes.
Numerous phone calls as I dared leave the house without taking her
Found very specific t shirt leggings (of which we have about 10 items of each identical) I spend lots of time on vinted..
Many many strictly episodes perused for the zillionth time...
Great upset as she couldn't go to the barbers like her brother - her hair had grown since last week apparently when she had her own cut.

I am nowhere near done but I'd be here forever!!! Will repeat all the above tomorrow.

I adore her but it's so very hard.
Waves of care going out to any parent or carer who will also be doing similar all over again tomorrow xxx

..

It is hard. DS has a twin sister and the things she used to have to do to accommodate him when small was more than any child should have to do - but she was great.

As toddlers he would wear a harness but couldn't do reins or wrist straps, so I used to run after him in the street and just tell her to "wait there!". Later, on bike rides, he had to be the first home. If she beat him back she had to turn round and go back, and come in behind him. In the car - he had to get in first. If she got in before him, she had to get out again and then wait until he was in. We had to leave parties and meals out due to meltdowns. Hard to explain to a four/five/six year old why she had to do these things but she was so good!

We now know she has severe dyslexia, probably ADHD and definitely on the spectrum herself (food can't touch on her plate etc) - but she was so easy as a small child (thank God!!).

They do argue as all siblings do but she gets him (after all, she is what she calls 'neurospicy' herself) and they are besties really. It's lovely.....

Every Christmas present is a fresh set of fleecy blankets because, after being washed almost every day for a year, the old ones smell Irredeemably of piss.

Every supermarket visit involves checking the displays of frusli, soreen and belvita.

Big stash of "deer socks" because he won't wear any others.

We are waiting for the weather to turn good so we can make the transition from long sleeves to short sleeves, for the summer, even if it snows in July.

The Sunday paper had Pi printed along the bottom of each page, hundreds of decimal places.. Memorised in one take.

Nobody on the planet can say so much with so few words.

Favourite book was an encyclopedia - did you know some slugs have shells, on the inside?

Forgot to tell us he'd come third in the world in an adult Olympiad competition.

He can sing one song to the tune of another - we found this out when he was five.

"No, we've not planned to go anywhere this half-term. How about you?"

"We're running a bit late, X's trousers are still drying. No, they can't 'just put on another pair', sorry.

"DofE? Erm, no..."

"Don't wait for us; we'll get there when we get there."

"Hi there, is this Chez Luigi's? I'm hoping to make a reservation for next Thursday. Can I just check whether the small table in the alcove on the right might be available? No, the round one. Will the big air-conditioning unit be running? Really... Look, on second thought..."

pretend their additional needs don’t exist?

Had to listen very often till how me as a 1 or 2lb baby had to exist in the 80’s
I think my parents got off lucky children who needed help where booted off to abnormal school. There was no adhd or autism for us just special needs If our parents could bare it. I haven’t had a relationship with a man and I’m never likely too. And no I’m not gay just the way I was brought up. Makes me angry in 2024 fighting such ignorance.

Everyone wants to hear what's wonderful about our kids. Everyone. So I can talk about his smiles, his hugs, his new words, letting me put on his suncream, learning his numbers etc as much as I like.

Very few people are willing to hear about what it's like to scrape his poo off the furniture, or follow him around the playground incase he tries to eat cigarette butts, or how his general lack of appreciation for danger scares the shit out of me.

Parents with NT kids get to vent all the time. Everyone will nod along sympathetically about the colicky newborn and terrible twos, but suggest that parenting a ND child is hard and people act like you're a horrible person.