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

It’s fucking exhausting but with sone perseverance and immense calm, I think we are getting through childhood ok now after a shaky start 🤣🤣🤣🤣

We also never have a meal out because of the sensory overload. The noise, the smell, the light, unfamiliar place, the wrong food (anything served would be wrong because it’s not home) etc.

When she was a baby she would cry if I put her in anything but a sleepsuit.

My ds is late teens now but I still remember the day when cbeebies changed the morning schedule. He couldn't go to nursery for a week.

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.

He needs to wear a tie as part of the required school uniform; but hates wearing it around his neck as it's too restrictive etc.

He wears it around his head instead & asks the teachers to refer to him Donnatella

@Changeymchangerson there was a thread similar to this a while ago, where it seemed every other poster was having a breakdown/drinking neat gin/driving off a cliff (sometimes all 3!) owing to KCC, don't know if you were on it too!

With our battle, they refused to assess, which DD's current head called the most stupid decision she'd encountered in 25 years of teaching. Two years, two tribunals later, DD has been offered a place at a Special school so niche they take 3 kids a year from the entire county and beyond.

Now have to get KCC to agree the funding, so it'll be me drinking neat gin, having a breakdown at the edge of a cliff shortly!

dh bought ds new shoes again, after his newest shoes lasted two weeks and now have a hole in the toe.he threw the new shoes across the room because they are lace ups and proceeded to cry for ten mins about how he doesn't like lace up shoes. he eats chicken nuggets for dinner every day. every single day. likes to listen to the same songs on repeat, the crazy frog phase nearly broke me 😂ds has to sit at the front with the bus driver on way to school so he can "keep an eye on him " according to dd2.

Yeah, we also have "onion rings" in the freezer (calamari) but she doesn't like onion rings and won't have any type of fish in the house due to the smell so they're onion rings for us.

We have red pasta and pink pasta as code for tomato pasta and spicy tomato pasta with gochujang paste and cream cheese. Because she doesn't like cream cheese unless it's in pink pasta or cucumber sandwiches, which must only be referred to as cucumber sandwiches.

Love her.

Stop growling and hissing at Mrs Ryan please Ruari.

Put your lanyard on. What fidget do you want? Do you need the chewie?

DLA, EHCP, Pediatrician, assessment appointments/forms/deadlines/reviews coming out of my ears.

Violent meltdowns so far out of the realms of NT family life I think NT parents or NT children would be horrified. Probably still try to blame my parenting though!

SEN parent support groups.

Crying in the HT office.

CAMHS crisis team direct number.

Wishing life wasn't like this.

Thanks both - dentists seems insistent on moving to an adult one, but not sure why. Have got some Waken brand from Amazon to try - it's strawberry and mint. Looks very posh 😀

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!

I should have shares in chicken flavour super noodles.

I know every single word of the Big Bang theory.

Dear camhs, just because my dd is autistic doesn't mean I should accept that she self harms. I want help for her. And not yet more CBT that doesn't work for her. In fact it makes her feel like her feelings are invalidated and makes things worse.Do not send me on yet another parenting course that's actually not even appropriate for ND children.

One birthday party invite her whole school life.

Finding another family who gets it, and then one day your DC and their DC take against each other and can’t be in the same room anymore and you never get to see that family again

Or finding another family who gets it but then your DC becomes utterly obsessed with their DC and it all becomes way too intense and suffocating and you try to pull back to allow a bit of space which leads your DC to have massive meltdowns begging you upwards of 300 times a day to see the other DC and it’s all they can talk about and you can’t sleep at night worrying that they will grow up to become some sort of stalker. 🙁

*He has multiple pairs of identical school trousers, but will only wear one pair.

*No wet or juicy foods - except fruit pouches.

*Step by step reminders for everything.

*His school bag has to be unpacked and repacked every morning, even though the contents are the same every day (school books kept at school)

When I asked the dentist about this ( yep my son will only use the strawberry one) she said as long as it’s got 1400 fluoride it’s fine ( we are in the uk)

have to lay out the clothes your DS aged 14 needs to wear to school every day and then doublecheck that they have not just put the clothes on over their pyjamas.

Finding clean knickers hidden under the bed because the ones he has been wearing 3 days are more comfortable.

Having to go to an autism-friendly hairdresser because he can't tolerate having his hair cut (and that only happens 3 times a year anyway) and you have been banned from the other hairdressers in the village- because he can't tolerate having his hair cut.

Having to write (after multiple school warnings) a formal e-mail to the school explaining that while laceup shoes might be part of the uniform he cannot use them due to dyspraxia and Velcro comes under 'reasonable adjustments'.

Having to explain to the school that the bloodstains they see on his shirts are because his current incarnation of pica is scratching his own skin and eating the skin flakes.

Having to tell your child (then aged 12) that he really can't (literally) eat his school library books. Or his socks. (TBH never a parenting issue i had forseen).

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

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!

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.

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.

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"!

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.

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.

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