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

"What does your mum have for tea?"
"She usually has a sandwich, quite early, standing up".
I actually feel a bit weepy at thought of having a sit down hot meal with a few cooked vegetables.
Maybe one day.

Are you sure she's autistic? Because she made eye contact with me

I have lost count of the number of people who have said that to me. Yes I'm sure, I've been sure since she was 5 but it took years and years to get a diagnosis because she's so good at masking so yes I am definitely sure. And I see the unmasked girl who hasn't gone to school for 18 months. Oh and no I don't think she'd go if I were just a bit more firm with her, and yes everything you are about to suggest we've tried - but go ahead and tell me what you'd do even though you have no idea how fucking exhausted we all are.

This made me collapse with laughter. It's just so so true.

That I’m currently sat in bed, drinking a coffee and crying with the relief at the peace of an extra day because it’s a bank holiday which means my DS (21) is staying over at his girlfriend’s house for 3 days, instead of the usual 2 days he does at a weekend.

Clearing my schedule for a few days after half term because my brain will be mush after being monologued at, screamed at, hooted at, roared at, growled at, slapped, pinched, jumped on, physically forced to point my face at whatever he is watching on YouTube, made to walk around dragging him on my leg, with the TV and the gaming console simultaneously on top volume non-stop for at least 18 hours every day for a week and I just need a bit of time once he’s back at school to see if I can emerge from the protective numbness and have a little cry.

And no, he won’t attend holiday club. And no, he won’t be looked after by anyone but me and his dad (preferably both of us at once). And yes, we’ve tried. Over and over, for years.

This resonates with me so much, my DD is exactly the same, I’m already exhausted from it all and it’s only been the weekend.

Cooking fishfingers at 4am.

I’m an adult currently awaiting an assessment. So much of this thread makes sense - I’m still learning. We still have long way to go - but thank god there is more awareness and understanding. I mask very well. No one would ever “know” . I grew up in the 60s/70s . My childhood was very very difficult. I was sent to a school for the most “disturbed” children for school refusal. I’m still traumatised by it. We were given Valium routinely. I remember other kids smashing the place up while I cowered trying to stay out of their way. One of them went onto murder two people. I remember being told I’d made my grandmother ill by my so called tantrums - even caused her death . The best thing I could do for my sick dying father would be to be a good girl and go to school - I still feel guilt now. Being called a selfish brat because I wouldn’t part with my treasured toy. So many more stories . There’s a part of me that still thinks I could have “helped it”
I can recall hearing the screams of a child being caned at mainstream school - he was so obviously autistic.
I could go on …

Totally this! "she's not that autistic, you know". Thanks ExMIL. It really helps to hear things like that, with an implication that I must just be a shit parent then.

Her teachers "she can't be autistic, she's perfect. She's an angel. She's absolutely perfect". Would you like to come to my house and she what she's like when she's not masking at school all day?? In fact, you have now used the word perfect so many times, does it not raise alarm bells to you that no child can be that "perfect", so there might possibly be something going on with them??

Making 3 different meals while having someone wittering on about TV episode guides/ current occupants of a retail park/ bus fleets/ Christmas / all of the above and more in rapid succession and ramping it up if you don't give the expected response or miss the deliberate error.

They should be made to do that on Masterchef. The phrase "go and annoy your dad" gets muttered a lot.

@Listinggracefully it's good to have a space to vent. It drives me mad if people ask how we are because I know they will have some stupid suggestion for how we could change things. As if we hadn't already done everything

Unsolicited advice alert: you may be able to find it at a vastly inflated price on Amazon, or the brand’s own website.

sorry if you’ve already tried these routes!

My 2 are lower on the spectrum than some others here, but both have multiple SEND. My DD10 has needs are complicated as they are many, but she does well at school with only minimal help. My DS6 needs aren't as complicated but he needs extra funding and support at school. My DD is diagnosed and medicated, my DS has been referred but we are still on the waiting list for an appointment so no diagnosis yet. My DH is also ND.

I can only buy trousers with an elastic waist band as they wont wear any other trousers.

I am contemplating getting a sign that says 'clothing optional after this point's for my front door as the first thing they do is strip to their underwear when they get home.

I have to constantly make sure the freezer door is shut (all 3 have left it open on more than 1 occasion) and that the oven is off (my DH has left it in overnight twice)

Depending on what I am cooking I have to cook 2-3 different meals at meal times.

I have to feel at every single blueberry to make sure they are hard and haven't gone soft or my DD won't eat them. (DS won't eat them at all)

Constantly having conversations about why we don't play with our own faces

Walk out of the doctors looking like I am about to start my own pharmacy.

I'm like this. I wear my shoes until they fall apart and if they aren't comfortable the second I put them in it they rub me I won't wear them again. It has taken me 35 years to work out how to check, double check and even triple check shoes before buying them.
A couple of years ago my mum insisted on buying me some new shoes while we were out shopping and we went to every shoe shop before we found a pair I would even try on.

Today is a bad day. Both DC had challenging days (both on the waiting list for assessment). It broke me. I didn't help them in the way they needed to be helped. They're asleep now. I'm relieved I can just exist in silence for a while. and guilty I wasn't enough today.

There has been a local child death this past week. I should be so deeply grateful it wasn't either of mine, and intellectually I am, but emotionally I don't know where I am at, or how I feel about anything. You would think something like that would put life into perspective, and make day to day worries seem smaller, but it hasn't.

I saw the thread title and thought the solidarity might make me feel better, but I've just realised it's never going to get any better or easier for any of us.

Snaketime
i referred to the spectrum at work recently and I was told it’s now an offensive term. That’s news to me! The person I was speaking to told me her DP was neurodivergent and I clearly had no understanding and should know better - oh the irony 😩

Sometimes, we've waited (lying on the pavement) 40 minutes to get on a bus because the four that arrived first were the wrong colours.

All the terms are changing so quickly, I was told that it is no longer ASD but ASC now the other day, as disorder is such a negative term so they changed it to condition, which I think is worse.

@PeapodBurgundy offering a handhold. The guilt can be an absolute killer sometimes. We’re all doing our best, even if that varies day on day.

I don’t know what’s worse - the NT assumption that our children couldn’t possibly have any additional needs and we’re just shit parents and probably insane, or those people in the ND community who make it their life’s work to call one another out for not NDing correctly.

Everyone’s a critic!

WTAF? The MMR jab? I don't think you're on the right thread.

This is only done at non-medical level and is very misleading. Disorder and condition have very clear and distinct medical definitions. In our house we just use AS, but we all know the correct term is ASD.

The term "spectrum" is almost universally misused, including by many professionals and on this thread.

Oh do fuck off with your vaccine shite! Wakefield was a total charlatan!

Anyone fucking hate half term?
My ds just can't cope with the routine change.
Hes just smashed my favourite cup, 2 plates and is screaming he wants to wear his uniform, which I'd let him do except then he'd be inconsolable that his transport isn't coming and school is shut.
He's chewed through a pj top and called the lovely delivery lad a shithead because he jumped when the door went and lost at a game. *
If the fella wasn't so lovely I'd probably live in fear he'd one day have enough of my ds's gob and post us anthrax.
Luckily he finds him funny and usually I see the funny side but today I'm exhausted from it.

* same delivery guy for years and his name is John, ds calls him Joe and when he started school added him to a list of people who were important to him.
John since has forgiven the wee shit with anything. More fool John 😂