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

No, she's not lazy, if I put her down or take her out of her special needs pushchair, she'll run and keep running, probably into an on coming vehicle/open water/someones garden or house.
"She stripped off her shoes, socks, trousers and pull up in the playground again, so we'll be keeping her indoors at break time".
"The dining hall is too overwhelming for her, she was climbing on tables and walls, so she needs to go home for lunch." - 3 years ago...
Everything gets launched across the room once she's done with it.
Did we go anywhere nice during the holidays? No.
We rarely take photos of her because she rarely has clothes on!
We have to immediately stop what we're doing when the washing machine starts it's spin cycle. I must sit and hold her dog soft toy whilst she swings on her doorway swing. The same goes for when certain Cocomelon songs come on.
Locks on multiple doors, cupboards and windows, keys hidden.
I know it's -5/torrential rain and she has several coats, but she feels a short sleeve tshirt is sufficient!
Bing and Cocomelon on repeat during waking hours, even when she's not in the room.
I'd she coming in for a hug or a headbutt?
Sorry, went off on a tangent there...

Just want to tell you all you are fantastic parents, and thank you for the thread which is the most incredible eye opener.

❤

This has been one of the best threads I've ever read and makes you feel like your not the only one. Thanks OP and all who wrote in.

Going from winter coat to lightweight coat. 😬 Could be boiling outside but the winter coat is very much wanted.

Mine won’t wear a bloody coat!

Child has just gone to bed under a weighted blanket and two duvets and tried to demand an ice pack to go with them.

Mine had a 17 tog duvet and 2 blankets.

After one hot night where she sweated all night and didn’t sleep she removed one blanket.

Having to buy multiple different flavour/brand 6+ toothpastes to try him with after he turned 6. I knew the fruit flavour would be best for him, but he said it 'burned/hurt' his mouth, so I had to prove that other versions, all mint flavour would be worse, I was right but still had to ease him in to the new 6+ fruit flavour toothpaste with teeny amounts until he got used to it because we couldn't go back to the 0-5 fruit flavoured toothpaste as he needs the higher fluoride content now. Where we live has very few child toothpaste options. I kind of get it, I hate changing toothpaste brands myself as it always tastes disgusting for the first week until you get used to it. I suspect he will be using fruit flavour for a long time.

Having to plate his food so it isn't touching too much on the plate, if crumbs from 1 food get on another food having to wipe or rinse it off.

He won't eat wet (e.g. sour or pasta with sauce) or blended food (except pizza or jam sandwiches/bread and butter), he won't eat potato products as he doesn't like mash (even the 'mash' inside of fries except for McDonalds of course, I have just found a super crispy skinny fries frozen product which he will eat!!). Will only eat the skin of a jacket potato. Eats very little protein, barely any cheese, very little/few types of meat (I wish he would eat chicken nuggets, he doesn't even eat McDonalds nuggets).

Will stop wearing socks when they start to get threadbare because he's worried it will turn in to a hole soon.

Hates getting his hair cut so gave him the choice to grow it out, but now have to be super careful brushing it because he will scream and cry if I pull a knot too hard.

Worry how he is perceived in winter when the wind is strong and cold where we live, he hates it and absolutely screams like a banshee... worry he will scare other children away.

He was supposed to go to his second ever birthday party today (he's almost 7 so judging from other posters not doing too bad with this) but he has a stupid f'ing stomach bug so couldn't go and I'm worried about it affecting his friendships and whether it will turn out to have been his last ever birthday invite/whether he will be invited to another any time soon.

Ds has refused to wear shorts since age 4. I randomly bought him a pair from a charity shop. Has not taken them off for 6 days now. With winter coat & heavy army boots. Nearly 20.

I can’t tell you whether we can come to [important family event] until the last minute.
but once I’ve said we r coming, absolutely no minute detail of the day’s plans can change

I can summarise the travel plans and time out of the home in the ?5 seconds person who needs the information has, before they become so overwhelmed they get annoyed at me

I cry sometimes at seeing younger sibling sail past social milestones older hasn’t achieved.

I can find joy in the small connections

Yes, I don't object to ds1 having coke or coffee the caffeine calms him down.

And yes if ds2 wants to spend the day under a blanket, so what.

I still don't get why adhd treatment is amphetamine based but hey ho!

Mine is a teen now and talks the hind legs off his barber.

But it took years to find one who gets it.

The barber I take him to is so amazing he rang me before an appointment one day to say he had to change the location of his chair in the shop from his normal spot and wanted to check that DS would cope.

What an incredible thing to do. Some people are so kind and aware.

Another one from me:

Having a 2 drawer airfryer so theres no chance of DCs food touching the food they don't like.

My DD’s on ADHD meds. (She’s Audhd)

Coffee sends her crazy. Even before the meds.

I find we're tightening up our childproofing as our son gets older, rather than relaxing it.

She has has exactly the same coat for 8 years now thank god for vinted. I have just purchased the largest size they ever produced and I am dreading when she grows out of it.

My house is full of stuff. I put it away and try and get rid of it around a year later. Last month she asked for her roller skates. I found them in a box we hadn't unpacked when we moved - in August 2020. She remembers everything!

I don't have an evening. Getting her to bed takes around 3 hours. It has always been like this from babyhood. Sleep is for the weak. 50% of the time she will end up in my bed anyway.

No, teacher she does not have a close knit group of friends. She feels like an outsider and doesn't understand why no-one gets her. I realise you "can't imagine her ever having a tantrum", that's because she is so exhausted from masking at school, it all comes out in the evenings.

Sainsburys have stopped selling her breakfast drink. I don't know why as, according to my sainsburys statistics, I was the 6th biggest purchaser of this drink in the entire North West last year who the fuck the other 5 were I don't know. My stash will run out at the end of next week, so I am going to have to source it from every other supermarket I the area.

She is the most adorable, funny and quickly little being I know and I am so lucky to have her.

This thread.

Wondering whether your highly talkative child really is autistic and then reading through something like this and going yes... yes... oh jesus that's not just her?

The running away like an energizer bunny. Having to go first up or down the stairs. The food. The fucking fucking socks.

The having a second child and realising that things you deemed normal in infancy and toddler hood... weren't.

I am autistic myself and it's still so bloody hard. Because I feel like all I know how to teach her is how to mask. And she triggers me every day because she shines a light on my weakness, my mismatches with society and I'm so afraid of her having the same or worse struggles.

You can save a fortune on calpol for over 12s who can't swallow tablets by getting soluble paracetamol at Home Bargains- just paracetamol tablets that you drop in water to make your own liquid solution.

Be warned, the resulting drink is fizzy, like sparkling water, which is a new sensory problem. I dissolve the tablet in a drink of fruit squash, but with added sugar, because the sugar flattens the fizz.

A child who does not like loud noises...yet has the loudest high pitched shriek of all!

My DD can't swallow tablets, but also can't tolerate liquid medications or dissolvable tablets. Luckily she's never needed antibiotics.

I'm up reading Mumsnet past midnight to have some time to myself because it took so long to pat her to sleep.

I'll head up shortly to sleep next to her, because that's the only way any of us get to sleep.

Sorry if that's obvious or you tried already, an additional option is to wash the new ones a couple of times along with the current clothes - not as often as the one in use (or they'll wear out too fast) but perhaps a few times before they are being introduced.

@StarsBeneathMyFeet

Before being diagnosed, most playdates ending in dissonance because the other children weren't playing within "the rules".

OMG I have suspected for a while I might 'be on the spectrum' but this is making so much sense of my childhood.

Toothpaste - made my gums burn. Eventually I discovered powdered 'smokers' toothpaste'.

Texture - nylon is scratchy as are clothes labels.

My lunchbox is a bento style with 5 different compartments, I have a cupboard full of ramekins and small plates and I am seriously considering buying a set of thalis.

I have coats, I rarely wear them because it is rarely cold enough for me to need one.

Obviously if I am then I function adequately most of the time.

You all sound fabulous, exhausted but fabulous loving parents.

It also makes me understand why one of my uni lecturers drove a campervan not a car. His teenager used it as a second bedroom so his parents could visit friends relatives and son could say 'hello' and then escape to his 'room'.

Getting up early every morning to prep lunch items so that DD can endlessly move them around lunchbox and find the perfect pattern. Spending stacks on clothes as she will likely go to pieces and have a huge meltdown and be unable to attend school. Being on high alert and panicking constantly in case I have dropped a ball or haven’t thought of something. Dealing with her going to pieces & screaming multiple times per day. Being on constant tenterhooks and buying extra food to keep things calm.

Dealing with DS - dealing with his three foods that he rotates - biscuits, nuggets. Tucking him into bed with a million blankets and a fan. Medicating to go to sleep. Laying down with him until he sleeps, even though he is a teen. Watching the Titanic every single day in life.

Juggling multiple dinners every day as a single parent. Trying to keep them both calm and regulated. Remembering my old life and active social life before kids.

Feeling that my own career, self confidence and self worth has gone to shit.

To flip this thread on its head a bit...

DS created Sonic the Hedgehog figures from Lego, straight from memory with all the right proportions. Some of these have been in local art exhibits.

DS improved his handwriting skills and tolerance for writing utensils by drawing comics, and he's very good at drawing and his handwriting skills are better than his NT peers as a result.

DS continues to be so enthralled by creating animations and doing voice-overs and voice acting. I've been working very hard towards guiding him to a career there, as he's very keen and talented.

The sincere joy I get whenever I receive a positive message from school about DS's behaviour and progress. Mind you, I receive many, Many, MANY more negative ones. But each win is a win.

DS is pretty good at communicating his needs and self-advocating. He decided he was coming off of ADHD meds so that he could learn to regulate himself without them. He takes great interest and collaborates whenever his EHCP comes up for renewal.

And that's not to take no notice of the significant struggles we as parents face. But this thread seemed very... uh... Autism Speaks-ish? iykwim?