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Original poster

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:
JellyJazzy · 26/05/2024 23:27

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!

Bigredtrain · 26/05/2024 23:24

TheAntiHero · 24/05/2024 23:30

I've got so much respect for you all who are struggling. My son has Autism. Thankfully primary school has been manageable. I'm dreading the transition to high school in September though.

For me it's that - I cannot take the bins out without a follower.
My house has a collection of sticks on the coffee table.
Every pen in my house is chewed.
We do not eat food with sauce.
I have to go outside to eat my crisps because they smell.
I will never change plans. Ever.

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

Teenagehorrorbag · 26/05/2024 23:21

"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.....

StormingNorman · 26/05/2024 23:01

Cheswick · 25/05/2024 11:43

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?!

Show quote history

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

SatinHeart · 26/05/2024 22:10

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.

greenpolarbear · 26/05/2024 22:02

Ellie56 · 25/05/2024 17:58

We ate white meat for years as my son would have a complete meltdown at the word "chicken." He even shouted at the television if someone on there said the word.

When he was 20 he had CBT with a fantastic therapist who was experienced at working with people with autism and she finally got him to accept "chicken" and all the other words beginning with "ch",that had been so problematic for so long.

I will love that woman for ever.

What magic did she do??

Lulu49 · 26/05/2024 21:57

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.

Jeannie88 · 26/05/2024 21:49

fabulosaaa · 25/05/2024 08:36

Spending an obscene amount of time choosing new clothes she needs (checking the seams, waist bands, cuffs, neckline, fabric type). Then never being able to return them because all price labels and internal labels need cutting out before she will try them on.

Protecting 2 pairs of socks because they're the 'safe' socks and panicking when one singular sock can't be found.

Stressing out when M&S discontinue her school shoes. She needed a bigger size and they were out of stock with no view to restock. So spending 30 minutes in the shoe section man handling shoes to see which felt the same weight, had the same sole thickness, had the same inner lining and same t-bar Velcro strap. Wore them for one minute and refused them. Had to find the exact same shoes on Vinted and now having to find them in the next 3 sizes up to last through primary school because trying to transition to different shoes just isn't worth the stress.

Trying to protect her NT sister from her meltdowns. She is often the target when her sister is struggling.

CONSTANTLY worrying that ive missed something, or that theres something else i should be doing. Constantly being on a high state of alert and trying to predict behaviours and mitigate them.

Thats the tip of the ice berg. Shes my world but my god it's so hard.

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

MiniBeesMum · 26/05/2024 21:49

Jeannie88 · 26/05/2024 21:46

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

Show quote history

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

Jeannie88 · 26/05/2024 21:48

unlimiteddilutingjuice · 25/05/2024 07:49

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

The only vegetable he'll tolerate is tinned tomatoes. But, for a long time we couldn't acknowledge they were tomatoes. We just called them "red".

As in..."Would you like red pasta" Or..."I'm just nipping to the shops for a tin of red"

Love it! ❤️

Jeannie88 · 26/05/2024 21:47

Alalalalalongalalalalalonglonglilong · 25/05/2024 00:25

Sorry he can't come to the door right now, he is under his blanket. No I won't tell him now, I'll pass on the message after blanket time.

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

Jeannie88 · 26/05/2024 21:46

DoctorDolittle · 24/05/2024 23:13

We have breakfast at 7.00am exactly. Every. Day.

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

Matmore · 26/05/2024 21:22

I cooK fish fingers on Christmas Day!

CestLaVie123 · 26/05/2024 20:24

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

LadyBadluck · 26/05/2024 20:13

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.

Wimpod · 26/05/2024 19:59

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. 😂

lilkitten · 26/05/2024 19:56

oakleaffy · 26/05/2024 18:49

My son is a man now- but all of this sounds so normal to me!

Watching same few videos on loop 🔁 hundreds of times, finding sleep hard, not fitting in with the “ Crowd”
but very good at precise skills-

I wonder reading this if I too was autistic as a child- only ate beans on toast for years, detested noise ( still do)
Obsessed with certain topics.

Pointless getting assessed now - or is it?
Crowds I detest.

tiptoe walked constantly and refused to wear shoes and school ties

A lot of stuff o here seems so normal

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

linsey2581 · 26/05/2024 19:56

Having to find places to eat that can make plain food no sauces etc.
Me :Why do you only have 1 sock on?
DS (21) : because the other one has a hole in it.
Also Greggs will never go out of business as my son buys spicy chicken gougons and 2 sausages rolls for our back lab 😂

lilkitten · 26/05/2024 19:53

I wish I could see the inside of socks and tights before buying, so many wasted!

Not using the toilet at school or out and about because of the temperature of the seat if it's been used, or it feels strange.

Must be the Macaroni in the yellow and green label.

Teachers not believing that he had a broken leg, as he would scream but then run around...he did have a broken leg, but try telling him to stop moving!

LeopardPrintIsNeutral · 26/05/2024 19:51

Here’s your receipt for 100 fish fingers, 10 packs of freeze dried strawberries and three bags of oven chips… the only food your child will eat..

Newuser75 · 26/05/2024 19:46

AhNowIGetIt · 26/05/2024 18:40

It’s probably been said before, but:

Trying not to lose your shit when people say things like “Everyone seems to have a label nowadays” or “How useful is it having a label anyway?”

Trying to accept that you can no longer have even a glimmer of a social life any more because your teen child is too anxious to be away from you, but socialising with them there too has also become too difficult. Oh and because of your other child/children with similar problems too.

Feeling emotionally spent and as if you have pretty much disappeared as a person in your own right.

While also trying to deal with sick elderly parents at the same time.

Sending a big hug to everyone else on this thread. It’s all so tough but this thread has helped me a bit.

Totally!!
Or, everyone is on the spectrum!
And also, (some people may disagree with this). ADHDis a superpower! Doesn't feel much like a superpower when you have to replace things your child has lost over and over again, tried to get them to calm down when they are literally bouncing off the walls etc etc etc

AFingerofFudge · 26/05/2024 19:33

DS2 (now 21). He's at uni (a whole other story) and a box of Skips arrives from Amazon the day before he comes home for holidays. At least he's buying his own now!!!

Kickstartplease · 26/05/2024 19:26

@Madmumof769 we do that too

Clareypoo · 26/05/2024 19:17

Explaining to friends that DS would rather visit the carpark of the zoo/pool/farm/soft play than the actual place so we'll see you in the car park afterwards for an ice cream.

toxic44 · 26/05/2024 19:02

I bought a much coveted dinosaur book, kept it for the birthday the following week. Refused even to look at it because it had been 'hidden' for four days.
Unable to eat the meal because three peas have touched the mashed potatoes.
Will not use public transport because strangers have been sitting on the seats.

Believe me, you watch every word you say, every facial expression and gesture you make and live constantly in fear of triggering a severe, self-harming meltdown. And you pray to your God every day that they will find a way to survive when you're dead.

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