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

It took us 10 minutes to put two identical items through the self service tiles at tesco

We like empty places

I haven’t had a full nights sleep in 7 years

Hairstyling and Bushcraft! Amazing.

Thankfully for me, it's only necessary that the cake be themed around a historical event.
It can then be brought out to general bemusement at Lazer Quest.

I have to remind myself that it's regarded as normal and non-threatening to make eye contact with people, rather than have entire conversations looking straight ahead or behind their left ear. I also fail to insist upon eye contact and sitting/standing up straight at all times and do not take a profanity issued in frustration that isn't made directly 'at' me as a heinous crime deserving of a bollocking and subsequent punishment.

I have to remember that not everybody wants to be handed a cable tie, squishy spiky ball, quarter inch nut and bolt or other item when they sit down.

It seems strange and alien that some people actually welcome friendly touch and expect handshakes or people to sit close to them during a discussion, as they aren't expecting arms and hands to start waving around. And they would find somebody not welcoming touch or 'social kisses' as weird.

Some people find long passages of text instructions perfectly understandable and don't see the need for larger, clear fonts and screenshots/diagrams for every single step of a process or concept, so I have to be prepared for questions as why anything I produce is 'different' to the usual style.

During planning meetings, it's not expected to hand out marker pens in multiple colours and A3 pads in preference to little reporter notebooks or scraps of reused photocopying and fine point ballpoint pens that make scratchy noises you can feel through the barrel.

I wouldn't dream of enforcing a shared lunch situation upon employees because the notion of forcing people who aren't related and are only there because they're being paid to sit in close proximity and eat food that is not announced/detailed in advance on paper plates with plastic cutlery directly facing one another whilst drinks are served in plastic or paper cups and they are not allowed to eat their own food in a place that suits them seems borderline abusive.

My first thought upon a new dress code or uniform is what the texture of the mandatory items would be and if there is any scope for wearing compression leggings, removing additional restrictive layers or picking one or two elements and getting something along the same lines but not actually the identical items.

I look at light levels, temperature and extraneous sound in working environments, along with whether there are any points where a person could be trapped and unable to escape immediately in the event of a confrontational visitor or just a need to get up and away and outdoors every 60-90 minutes.

I won't buy a single jumper or cardigan online, assuming that because it's the right size that it'll be perfectly comfortable.

I am also very conscious of non-verbal communication and can see muscle weaknesses, postural imbalances, non supportive footwear, suppressed anger, lies and anxiety in people who think that what comes out of their mouths is the only message they're broadcasting.

I'm used to explaining all the reasons, factors and possible consequences of any decision in full, even when the person I'm explaining things to doesn't want or need to know every single tiny detail.

I look at hand dryers the second I go into public toilets. If there is no off switch, dc cannot go in. I flick the switch and say it is safe. Then I have to deal with people who want to, but cannot dry their hands.

We get out of the car for school at 8:36. On. The. Dot.

I can tell which member of staff at school is calling me based on the time of day before I've even answered the phone (mid morning/mid afternoon secretary - we're fine, 1pm-3pm the teacher - somethings got broken (not necessarily equipment either)/DC has hurt someone/been rude to the wrong person, 8am-8.45am or after 4pm headteacher - serious and I'm likely to be called into a meeting)

I'm on first name terms with all the staff at our GP surgery and I can tell which receptionist I'm talking to according to their voice (useful as theres on particular one who will book us in to see the doctors/nurses DC knows well)

I'm also on first name terms with the nurses at childrens a+e at the local hospital

The specsavers staff greet my DC by name even if we don't have an appointment

The Education Welfare Team at the local council know my first name and use it

I can go years without needing to buy uniform (so I just restock worn out/discoloured items) or I can end up buying a whole new set exactly 6 weeks after I bought a whole brand new set

Same as above for clothes

"Why is she holding a book if she can't read, are you sure she can't read'

'She looked at me, how can she be autistic she looked at me and made eye contact'.

My daughter is now an adult, still non verbal, severe learning disabled and needs 2 to 1 carers when out and about and needs care for toileting, bathing etc. Highly complex behaviour needs but when young the number of people who'd said she'd grow out of it, they usually do when she finds her 'thing/interest' ... she never did.

Still sad at my loss of a daughter and my daughter's loss at a happy life without daily frustration and meltdowns 😥 if you don't understand that sadness, please just scroll by, no nasty or unhelpful comments are needed.

Thank you all so much, I can identify completely! There seem to be many common themes, also quite a few unique ones. I'm sure you all agree any small step forward is a big achievement. Can I ask a couple of questions please?

Has anyone been through the teenage years yet?

If they have defiance refusal disorder, has it improved with age?

I've been on so many courses, interventions, everything to try to help our dc but it's so enlightening hearing from other parents.

Thank you. 😊 xx

Space invaders here! X

Oh yes that one! Nope, tore it down and had a meltdown.

That will be because they aren’t worn in and soft. Pull at the material a bit and use fabric softener

Love him!

That's so funny! Doesn't tje school allow for sensory needs? Xx

This issue came up at one of the family support courses and the experienced dentist said as long as the amount of fluoride is 1450 (shown on back of tube) then that's fine. The fruity flavours all seem to be for little teeth, niche in market there ! Xx

We ate white meat for years as my son would have a complete meltdown at the word "chicken." He even shouted at the television if someone on there said the word.

When he was 20 he had CBT with a fantastic therapist who was experienced at working with people with autism and she finally got him to accept "chicken" and all the other words beginning with "ch",that had been so problematic for so long.

I will love that woman for ever.

Those moments are precious 💖

I currently have drool on my hair from a child. None of them are under five.

I've been on holiday every year to the exact same place, at the exact same time of year, for 17 years.

People assume my eldest can babysit my youngest when really I could also do with a babysitter for them, not that anyone's lining up for the job!

So sorry, all we want for our dc is for them to be happy and be able to function in society. She clearly has a loving and devoted parent in you and that makes a huge impact. Xx

Puft Hula Hoops for one child, Chip Sticks for the other!

I also have a million carrot cake oaty bars which apparently 'taste weird' and now can't be eaten. I'm assuming a change of recipe. Thanks, Organix! 🙄

This is lovely to read ❤

i remember buying a pair of trainers in every size they had available because he they were the only ones that he said didn’t hurt his feet and I wasn’t risking not being able to get them in future!
He now has a job, a girlfriend, drives, still has special interests although they have changed, needs reminding that washing and brushing your hair are things you need to do and still looks at me with a wtf expressions if I have to explain some expected social rule or explain certain responses and how showing interest in others is important and makes them feel valued.

And we still laugh at the first time as a teenager he went out with friends and their parents for dinner and I explained that he had to offer to pay for his at which point the parents would probably tell him it was ok that they were paying at which point he had to say it’s ok I can pay for mine for them to say no it’s fine we are paying for him to then say thank you, this is to be fair weird social behaviour and he asked why on earth people go through all that 😂

Having to do 'silent' sneezes so I don't upset dd and going around the house reopening blinds that dd has closed because she doesn't like bright light.

@Comingoutofmycage51 heinz spaghetti with sausages 😫. They are a staple for DS and I dont know how he will cope with the new recipe. I'm also pissed off because they've added gluten to the beans version with the change and although I don't eat them, I am GF and support the GF community on this issue. Bombard Heinz even more with disgruntled messages!

It's acceptable. Just in case you needed it heard from somewhere.

I'd also add:

If YOU find this in any way upsetting, please bring it up with YOUR therapist.