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

Every morning and evening I make DS a 'choc choc milk'. 1 scoop of chocolate milkshake powder, not the recommended 3, warmed in the microwave for exactly 50 seconds. Served in a sippy cup. DS is 11.

DD gets home from school every day and spends half an hour on the sofa decompressing watching TotsTV and Tom and Jerry. She's the teacher.

We've just lost 2 of the 4 dinners DS will eat, all because has been learning about healthy eating at school and apparently now he has decided cheese isn't 'healthy'

Fuck, @SatinHeart. I'd be raging!

I can’t thank you enough!!! Read this reply and ordered some for my little boy to try - and the usual drama did not happen!!! 💐

Just want to say thanks for this thread. I have three ND kids (DS18, DD16, DS14) and they are all pretty intolerant of each others traits and it can be hell on earth in my house some days. It's kind of nice to feel like I'm not alone.

DS18 can only eat burgers and chips, sausage rolls, crisps and that kind of junk. Is quite overweight and pasty. Doesn't feel guilt. Can't see anything from other people's perspectives.
DD16 has masked all her life and the ND only came to light about 18months ago as she masked in front of us as well. Within weeks of being diagnosed she had developed an eating disorder (AN).
DS14 so conflict averse (because of the noise levels) if he hears raised voices or crying (of which there have been A LOT in recent months due to DDs ED) he won't come out of his room, resulting in school refusal and pissing in bottles.

But then they can be lovely. DS18 watches TV series and films that I've recommended and tells me everything he loves about them. DD16 is an intelligent, creative brilliant person (one CAMHS ED lady told me she loved the connection I had with her) and DS14 is so so funny and daft that he makes me laugh every day.

But yeah. It's HARRRRRRDDDDD.

We have 30 minutes before we have to leave for school - we need all of that time for shoes and socks going on (and off again, and a new pair of socks, shoes on, then off again to rejig the toe area, rage at sock seams, throw a few pairs about after trying them, then finally getting shoes on)

That's brilliant! So pleased for you. ☺️

This is so inspiring to hear, thank you! 😊 Thankfully modern times means there is help available and experts on hand. You sound like a fantastic parent, you must be very proud, of them and duly to yourselves as well. Xx

Yes, that or the look that says how lucky they feel not to have these experiences. The usual growing up issues conversations are often a part of a 'good day' for our DC. Just is what it is. 🤷

Always been within 20 mins drive of wherever he is. Abi and we had the times in his teens when if he was overwhelmed he would shut down and run..worst time 4pm on a rainy November day I found him after driving around for 2 hours looking for him..he was dressed all in black and walling along the side of a busy bypass..agreed that day if he felt overwhelmed all he had to do was text me where he was and needed picking up. No questions asked from me. He has acted on it few times since. He is now 22 and more mature but still, never more than 20 mins away..

I know more than anyone needs to know about different hamster species. We do not have a hamster.

You are both so right. I refuse to just not do things or go places because things could be difficult. (Chasing him around the park watching him like a hawk while other parents are sat on benches chatting, my mum heroically throwing herself in front of some swings while simultaneously pushing him out of the way and flashing the whole park her knickers…)
And it really does feel like a small treat to have some good days and be able to ‘join in’ with ‘normal’ conversations about ‘normal’ kid stuff. Like you get to wear a different hat for a moment. Until the next bad day and you come crashing back down again.
and then you feel the guilt for even allowing yourself to think any kind of negative thought, let alone say them out loud or acknowledge them on something like mumsnet.
I feel second hand rage and despair for the children and parents that I read about on SEND groups and am terrified waiting for these horrible experiences to happen to us too.

Dd6
Can you come to the school to support us? Dd hasn’t settled all day and she’s now in the library with her shoes and socks off dancing on the table.

Chan you come to the school…. Blah blah. Dd was let outside for a movement break and she’s refused to come in and so the teacher, the ta and the ht have all been running after her to try and get her inside but she won’t come.

Smashed her last tests. Her teacher couldn’t believe that someone with that little focus or control can learn like she does.
Yes, I’m smug mum.

When he's pulled his bloody glasses apart again you check which members of staff are on at the opticians before you'll even entertain taking him to get them repaired

The (independent) shoe shop thats a 60 mile round trip knows him so well they know he will only wear 2 styles of shoe. So that's all they bring out to show him.

I buy seamfree socks in multiples of 50 at a time. Because that's all he will wear. The place I get them from must think I have some kind of sock fetish I buy that many of them.

Taking an hour to tell me something.

Constant stimming.

Constant questions

questions every action

always needs to know the time

Food motivated

Stuttering badly because he's anxious about getting it out and has a speech impediment.

Getting overwhelmed and having a huge meltdown because I've attempted to give him a very small chore.

His sisters ganging up on him because he's gotten out of chores, because they don't understand.

Certain socks, certain clothing need to be tight fitting because he feels safe and warm if it's tight.

Certain blankets.

Certain light at night.

Certain noises - We are too loud, she has ASMR on I can't sleep, I want meditational Monks on I can't sleep, he's got his Monks on I can't sleep.

Need to take plastic cutlery everywhere because other cutlery sets him off with the texture in his mouth.

2nd ND child:

Repeating herself. Over and over and over again.

Meltdown because I've tried to put her hair up and move the 'trigger fringe' from her eyes.

Meltdown because of clothing

Meltdown because someone has touched her bed and stuffed animals.

Meltdown because she doesn't understand.

Calls from the school because they don't understand. Not helping her in class so she sits there and struggles, too scared to ask for help.

3rd ND child - She's 16. I'm not even going to start.

That feeling when you pick up the heavily relied on item only to see the dreaded words “new and improved taste” on the packet…. noooo!!!!!!

This is the stuff of nightmares.

Thanks to the healthy eating lessons, my child from then on refused to eat anything in a flat, round shape, because "burgers are unhealthy".

We don't even eat meat- this was vegetable burgers that were being boycotted for life. It's nearly a decade later, and there's still no point in buying or making anything in a burger shape.

I really wish these people put a little thought into what they're saying. 🤬

Hoping DS would get a place in the specialist autism base, but in case he didn't ringing around every school to speak to them about his needs, if they could accommodate them, and picking schools based on the ones I felt most reassured by with regards to flexibility over uniform. He lives in jogging bottoms and will only wear wellies. If he got told off over uniform I know we'd be straight back to school refusal and probably violent meltdowns.

Luckily he got the place he needed.

Making sure there's a Costa nearby if we go anywhere new so he can have a cheese and ham toastie if he gets overwhelmed.

Working around all the appointments and the home visits from various professionals, and then they all just disappear on the grounds you have all these other people involved. Except none of them are now.

And things are going ok at the moment, quite calm, but I can't relax because it can change so abruptly.

The short-term effects were even worse. The poor thing left those primary school lesson, convinced that it was healthier to go without food entirely than to eat anything "unhealthy" your fond but foolish parents might make you.

Yep, careful questioning revealed that my child thought the health effects of a suboptimal diet would kill you faster than starvation! We sorted that out, but the emotional aversion to anything burger- shaped seemed too well-rooted.

Next time there was a healthy eating unit, I made sure to explain to the school how the previous one had gone, and the staff must have been far more careful because there were no problems.

Thank goodness too, because as already noted, the definition of 'unhealthy' that was taken away from the first set of lessons was incredibly broad. It seemed to cover everything except literal vegetables.

That all sounds so overwhelming, for them and you 😢❤️ Our lives change beyond that of the difficulties that come with 'normal 'parenting. I couldn't continue my career, was more than happy not to anyway, and have done agency work as needed so often, before and after school clubs were too much for them, wraparound care undoable as well. They come first, always. Xx

As bad as all of these experiences are to read, in a way it makes me feel better than I'm not a terrible mum for trying to just get through the days. Family do make the occasional comments of how my DD is a "fussy eater", and that I'm pandering to her. I've just handed her one of the four approved meals she'll have (a Chicago Town Deep Dish margherita pizza with sliced cucumber), while the rest have all had homemade enchiladas, but at least she's eating something

May I commend your DD on her bold choice of deep dish! That is next level ND food squish tolerance - my DC will only eat the thinnest possible pizza cooked to a crisp so that the cheese has carbonised and nothing about it is remotely moist.

I too wish that schools would be more careful about healthy eating talks. In a home where someone has severe arfid and you are hoping that Child 2 won’t follow suit, a teacher telling someone that a strawberry isn’t healthy.. it just is not a help!! Yes, it might contain sugar but it’s way healthier than a staple diet of digestives and nuggets.