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 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

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

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.

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

I know an awful lot about squid.

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.

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 …

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.

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.

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

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

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.

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.

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

Sending a hug x

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

I bought a much coveted dinosaur book, kept it for the birthday the following week. Refused even to look at it because it had been 'hidden' for four days.
Unable to eat the meal because three peas have touched the mashed potatoes.
Will not use public transport because strangers have been sitting on the seats.

Believe me, you watch every word you say, every facial expression and gesture you make and live constantly in fear of triggering a severe, self-harming meltdown. And you pray to your God every day that they will find a way to survive when you're dead.

Explaining to friends that DS would rather visit the carpark of the zoo/pool/farm/soft play than the actual place so we'll see you in the car park afterwards for an ice cream.

@Madmumof769 we do that too

DS2 (now 21). He's at uni (a whole other story) and a box of Skips arrives from Amazon the day before he comes home for holidays. At least he's buying his own now!!!

Totally!!
Or, everyone is on the spectrum!
And also, (some people may disagree with this). ADHDis a superpower! Doesn't feel much like a superpower when you have to replace things your child has lost over and over again, tried to get them to calm down when they are literally bouncing off the walls etc etc etc

Here’s your receipt for 100 fish fingers, 10 packs of freeze dried strawberries and three bags of oven chips… the only food your child will eat..

I wish I could see the inside of socks and tights before buying, so many wasted!

Not using the toilet at school or out and about because of the temperature of the seat if it's been used, or it feels strange.

Must be the Macaroni in the yellow and green label.

Teachers not believing that he had a broken leg, as he would scream but then run around...he did have a broken leg, but try telling him to stop moving!

Having to find places to eat that can make plain food no sauces etc.
Me :Why do you only have 1 sock on?
DS (21) : because the other one has a hole in it.
Also Greggs will never go out of business as my son buys spicy chicken gougons and 2 sausages rolls for our back lab 😂