Tell me you're a parent of a ND child without telling me...

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

Sending a hug x

C'mon, that's not ever Christmas cracker level of effort.

She's now a teenager with an eating disorder and I spend inordinate amounts of time educating professionals about her needs. The rest of my time is trying to keep her alive.

It's half-term and I'm spending my 'down-time ' working on her self-esteem and hobbies while also attempting to further my career.

I need my career to do well as the things which improve her self-esteem are expensive so I need to find a way to fund them.

Lots of people tell me that I'm the problem as I don't care enough. Super.

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.

I'm not surprised you've got so many points if you have 769 children.

God, no, I'm not putting the boot in, SO SORRY!!!

I meant I would add that to the t-shirt for any wizecrack who needs it!

OMG, I'm so sorry, I didn't mean for it to read that way at all (but I can see now why it might). All I can say is well done for getting so far!

I have twenty billion points on the McDonald’s app and we research the location of Golden Arches before we book holidays. 🍟

After school clubs however fantastic are not an option when your Y9 kid is in a rush against time to get homework done before meds wear off. No, weekends don't work, those are largely dedicated to melting down after a week of school.
Rinse and repeat.

Our DS was literally expelled from swimming lessons age 4 (before any diagnosis) because he "messed around" and they felt he needed 1:1 lessons.
We just took him ourselves and then he went with school. One day he decided he was going for his 25m badge in a 35m pool on the school swimming gala day. DH and I had taken the morning off work and couldn't quite believe what was happening.
ADHD for you, those impulses have led to all kinds of wonderful things.

Crying in Trader Joe’s (giant cartoon tears) as she wouldn’t be able to buy Everything But the Bagel seasoning at home (we make our own now 🙄). Crying because Taylor Swift played the ‘bonus songs’ last night that she wanted to hear at Wembley. Keeping the old pyjamas from her teddy bear even though they were falling apart - I had to source a now discontinued bear to strip naked for new ones 🤦🏼‍♀️ Having six of the same urban outfitters jumpsuits because they are ALL she likes wearing - no buttons, no zips, no patterns. Judging everyone and everything that crosses her path. Fixating on the tiniest of differences … unnoticeable to virtually everyone else. Apparently our milk cartons are now slightly more rounded …

His teddy never leaves his side and attends all school and college placements, sitting on the desk next to him. Teddy wears carefully homemade lanyards to prove he’s a member of staff at both school and college. DS and Ted are both 18.

I know an awful lot about squid.

If pump 5 isn’t free we can’t get petrol

My family can never have a conversation without someone either interrupted or leaping up and down beside the conversing people desperate to say whatever’s in their head.

Want some time to yourself? Get out an 18+ Lego set and it’s a day of bliss, but only a day as he’ll sit there until it’s done.

Always remember to factor in the transition de-escalation time into a day out. If it generally takes 3h to de-escalate and move on, stick it in the agenda (until future point when you find a technique that works).

Also, remember, 8 hours of solid center parcs swimming does not equal melatonin production, so bring coffee (for yourselves) and all the things you use at home to eek that sleep into reality.

Praying it doesn't rain so their football training / match isn't cancelled as we can't deal with changes to the schedule

Having to sit at the same space at the dining table, every meal

Having to avoid eating in the car as the noise infuriates her

Having to go to the same gym / restaurant / shop every time because dd knows it and hates change

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. 🤯

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.

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

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 😬

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

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.

@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.

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.