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

Having completely lost myself in the fight to try and get DS into school. He’s year 1, never attended full time, not attending at all now and KCC seem to take great joy in ruining our lives. I don’t know what will be left of any of us when it’s over. I don’t know if it will ever be over.

Hearing “I wouldn’t let me child get away with that, just tell him” from the tuts of disapproving parents in public. He’s demand avoidant, AuDHD- you get him to do it by just “telling” him. He’ll punch you in the face if you do. I know that, because he broke my nose 6 months ago.

“Doesn’t he need a coat?” No, he doesn’t wear coats, there are so many other battles in my life, I don’t care if he wears one or not. I’m not walking around holding it for 6 months of my life for fun.

For a child who’s so noise sensitive he’s the noisiest person in the world.

“What do you mean you’re never alone?” Well, he doesn’t go to school, I have no friends or family and so he’s with me all the time.

“Have you tried a parenting class?” You can fuck right off with that idea!

I love him more than I can say, but my god it’s hard. Harder than I ever thought possible and still survive, and if I’m honest, it’s survival and not happiness. But I can’t say that out loud because no one else understands, cares or listens.

😞 I hear you @Lostatsea10.

The year my DD was 7 was the hardest year of my life.

Are you on the PDA Facebook group for Kent? It's not much, I know, pixels on a screen, but I felt they got it.

Spending sooooo much time doing child admin (assessments, forms, researching schools, support, placements).

When the nice people at SENDIASS know you.

❤️ for you all, you’re amazing

My DD socks discarded the second we’re home. Needing to know where, when, what, who. Shoes on so tight she broke the strap. Meltdowns at changes.

Mild really compared to some.

Socks!!

No you can't walk around naked or you need to take your oodie off if you are too hot (depends on anxiety level whether it's no clothes or needs to not be seen)

We aren't in the pub because Mum likes a drink - mum is having a drink because we are in the pub as we had to have dinner here today & we aren't allowed to leave yet - The Rules (Doesn't leave the house now)

All the local takeaways know who I am
I have to shop at all the supermarkets in rotation as you can't get all the right foods in just one.

Optician who came to house as he can't leave - he needs to spend more time outside as all the reading is causing his eyesight to deteriorate.... What part of he doesn't leave the house do you not understand?????

I cut labels off every item of clothing. I recently had to take DC to pick a household appliance as if I chose it could’ve caused a huge, huge meltdown and a lot of distress. (Thankfully only a dryer and he picked a very good one which I love!). I have to prepare for any sort of change and do very gentle and kind reminders. We go to the same barber, every single time and sit on the same seat. I’ve recently bought 3 of the same jacket, in different sizes.

It's settling in day at the special school. The activity is cutting and sticking. DS rejects this activity. And instead draws a map of Europe with the borders as they were in1914. From memory.
Nothing about this suggests to me that this is the wrong setting.

At KFC we order the boneless banquet and look up European Royal families of Wikipedia.
This is because the first time we went to KFC....we had the boneless banquet and we looked up European Royal families on Wikipedia.
European Royal families are forever associated with KFC now. Why mess with a winning combination?

Oh look! Huel has brought out a new flavour
"No Mum. The whole point of Huel is you never have to try a new flavour"

Oh my god my son will only have that pasta sauce too!!

I have an excellent ‘don’t f*ing dare’ face for the times I’ve stood in the street/car park/park etc waiting for a meltdown to run its course and anyone thinks they should comment on my parenting. 2 police detoured round me once and didn’t intervene.

my knees are not what they once were from having to drop to the ground as he does

the constant bloody struggle for everything needed to help with education

I love him more than I can say, but my god it’s hard. Harder than I ever thought possible and still survive, and if I’m honest, it’s survival and not happiness. But I can’t say that out loud because no one else understands, cares or listens.

We had a meeting with the Ed Psych and SENCo at school to start the EHCP process (finally, after they'd resisted for ages...it turns out that school refusal has one benefit) and I said there that you're constantly alert, scanning the horizon for potential triggers to try to avert them before they happen, like the bloody Terminator. And that because of this, nothing is fun to do, it's just exhausting.

So many things resonate in this thread. It's tough-going.

Mine has the same breakfast at breakfast club every morning, the staff see him arrive and start getting it ready. I'm on mat leave currently so he could have breakfast at home but we cannot change the routine. He's changing schools in September and what he'll eat at breakfast club is his biggest worry. He's got a settling in day coming up and I've arranged for us to go in early and check out the breakfast club and what's on offer because although I've checked he won't believe me till he's seen it for himself. Thankfully he isn't insistent on particular brands so I know he'll be fine once he knows what the room looks like and that he can have his usual breakfast.

We went through a stage where we had a lot of meetings about the constant bruises and bumps on his forehead because apparently he should have grown out of banging his head on the floor. I did ask one person if they could let him know that because my hand was getting really sore from putting it under his head and my wife had to turn her snigger into a cough.

The only place she will go to is pizza express and the only thing she will eat is their kids tomato pasta. Our local restaurant knows us, and we order double portions because she's getting too big for kids portions. DD1 won't go because she prefers anonymity and doesn't like the fact that they know us there.

I've tried everything to recreate "pizza express pasta" at home. I've carefully studied how they make it in the restaurant (passata and bechemal), but it is rejected. At home only homemade pesto pasta will do. At least I don't have to worry about UPF if I'm making it myself. The snacks on the other hand make me so worried by how much UPF there is, but it's all she will eat. Same packed lunch every day.

@Listinggracefully, I've decided to ignore all UPF issues as, frankly, I just need DS to bloody eat something!

School sent some info on ARFID (he's not diagnosed, but I'd think he would be) and the advice was to just let them eat what they'll eat. I honestly wouldn't concern yourself too much.

We do insist on a multivitamin (has to be Barrett's tropical flavour!) for him, which currently he's happy to have.

When he gazes at a white space on the wall during maths, it's not that he isn't listening but there is too much information in his mind.

Which he would tell you himself if you asked Mr A, given he is 16.

I have to shield my 5 year old from dogs be I ng walked or cross the road, despite their offended owners protests that their dog is "harmless ". Both my autistic sons have a huge aversion to dogs

The people who go on about UPF and how those of us who let our kids eat them are terrible parents who might as well be offering them heroin can get fucked. We went through a stage where dinner was a bowl of shreddies and a couple of bags of hula hoops. We were just glad he was eating something and we wouldn't have to get him to drink a forti-sip while distracting him with videos of people building lego.
For some reason, masking maybe, he will happily eat school lunches as long as they don't put anything that might be gravy near it. As I said above we're changing schools in September and the lunches was a big consideration on whether to move him but we decided it was worth the risk to move him to somewhere that will now see him through to A levels (he's 7) whereas his current school is a prep so would have needed a move at 11 or 13 and we decided the earlier the better and the majority of the boys he'll be with will stay the same for the rest of his school life.

Sorry, thought this was a supportive thread, not an excuse to put the boot in.

Silently praying the stranger in the escalator won't push the button. Silently praying no one attempts to walk down a stairs immediately in front. Gratitude that DS never fell off the things he climbed when he broke free - the flat roof, the bookcase, the roof of the neighbours car, the wheelir bins, the bar counter at the pub, the rock that jutted out into the sea while the tide came in.

@LurkingAndVenting I’m really pleased for you and your DC.

It makes me feel pretty lousy however when other SEN parents (often of kids with fairly low support needs) want to tell me to celebrate the positives and the superpowers all the fucking time and that it’s somehow nasty to speak about the difficult aspects of my own experience, and those of my child. Who is fantastic, and also has a very, very hard time of life.

And much of my pain is the pain of seeing my child struggle so much. So yeah I am not always in the right frame of mind to shout from the rooftops about how blessed and lucky and creative we all are.

We don’t tell parents of NT kids they’re not allowed to moan from time to time about their sleepless nights or difficulties. Their challenges getting support from school. Their struggles with potty training or feeding or behaviour or sleep. Or getting appropriate medical care. But if we mention the difficulties these issues pose for us, we’re being what… ableist? Autism Speaks-ish?

I’d imagine over half the posters on this thread are probably ND themselves and are still having a hard time with various aspects of parenting their ND children, and it’s not all down to their own ignorance or prejudice or bad attitude or normativity or secret eugenicist agenda or whatever you imagine is going on for those of us who are doing our absolute best and more for our children, and just want to be able to vent sometimes, to people who we hope won’t shut us down and misunderstand us, like most of the NT parenting world does.

11 year old son,

Me: you're getting on my nerves, please stop doing that.
Ds: how can I get on your nerves, they are inside your body.

Ah yes, the literal side of autism.

My child’s uni shop order has 30 jars of the same brand hot dog and has the no substitute box ticked.

My son has a small red mark on his knee from falling over so the last week or so he's refused the bath because he "can't look at it AT ALL" so I've washed him with a flannel while he shuts his eyes 😬

”do an autism” 🤣🤣🤣 this is so spot on!

It doesn't matter that a key part of your ds symptoms is being easily distracted and horrendously forgetful. We're only going to offer minimal support that relies on him remembering to get there off his own back and will take it away again if he doesn't turn up. This will also be scheduled in lesson time so he will miss out on core learning and no he can't set a reminder on his phone as this needs to be switched off.

OMG yes. The deeply Kafkaesque nature of accommodations offered. You have to have the skills you don’t have in order to access the skills support. 🤯