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

I spent £5 a pair on socks for years because DD could only tolerate these socks and otherwise would not wear shoes. If I find clothes she likes, I buy multiples but even then sometimes the new ones ‘aren’t the same’.

Oops, posted on wrong topic, was meant to be parenting! This isn't the easiest site to edit, apologies as it's not aibu, well suppose it could be as iabu as to whether people can differentiate between SEN and a child being obnoxious. Xx

Which dinner are you having tonight, the hot dinner or the cold dinner?

No, I am not willing to agree to that school place 73 miles away. Yes I know the first names of all the members of staff at the ehcp team, and I can share some tactics to get them to answer the phone. Yes we are waiting to go to panel AGAIN.

Yes I know he looks "normal" Joey, do an autism for the lady please..

As a brownie leader we would always take a child in a trip no matter what their disability. If something was an absolute no-go, we just wouldn’t do that trip.

however, conversely as a parent of a ND child, you do also have to parent them effectively like ever other person to fit in with society, your family, school and to help them to develop as an individual.

She presents as a lot more socially able than she actually is; please keep that in mind.

Oh, she had a meltdown because she was frustrated and overwhelmed… you don’t say? 🤦‍♀️

She threw Pencils about the class as she was overwhelmed. (She was then threatened with being thrown out of school but she doesn't have an ECHP in place yet but I get disability payment for her so she should be protected)

She hits out when people are in her personal space.

When she is a danger to herself and others without realising.

Just discovered just dance and unlimited. Plays cotton eye Joe and eye of the tiger repeated for 4,5, 7 to 8 hrs only t find they are now getting rid of unlimited and those songs aren't on the newer platforms. Ubisoft not helpful

It cost me £950 just to attend hospital appointments last month!

Oh yeah your daughter has to stay away from mine (even tho the other one had been winding mine up)

Covering her ears and having a meltdown at hand dryers.

So much more I could say but this is upsetting me as it is.

I changed my start time to 10.30 to allow me an hour to get dc actually into the school building

We have breakfast at 7.00am exactly. Every. Day.

6 hours sleep at night is a decadent luxury!

Liquidising bolognese sauce, but burgers, Moroccan mince and chilli are served as the recipe intended.

Trying to wash and dry teddy bears in a day so she can sleep.

Calling sweet potatoes "pink potatoes" so she'll eat them.

Searching out non mint toothpastes and mouth wash with the right amount of fluoride, multivits that don't smell funny, and having to give ID to collect her prescriptions.

She's 17.

Definitely had the being called back from school before I'd even reached work. So. Many. Times.

The worst interaction was a mum phoning me to tell me that her DS was really upset and troubled because he'd seen my DS trying to strangle himself with his coat sleeve in the playground (of course no supervisors cared/saw). The mum was really worried and needed to tell me. I ended up comforting her that we were dealing with it.

DS was 9 and had tried cutting himself with knives and attempted to jump out out of a 3rd floor window in the previous weeks.

(On the plus side, once he started taking his adhd meds his emotions calmed down loads and he is now generally stable emotionally, even though going through puberty. Fingers crossed for the teen years)

The school office lady has seen me cry more times than I care to admit.

Sometimes the only way to calm him down is with a big, tight squeeze. Can feel him melt into you after a little while. Timers to help with time management, having to repeat instructions constantly because he gets distracted, things needing doing in a specific order, went through a phase of disappearing from his classroom (thankfully this one seems to have stopped)

Almost a year into a 2 year waiting list for an ASD assessment so we'll see what happens

Having to replace t shirts and hoodies every two months...because he eats them. He's 27 next month...

Never going away as a couple, without him. Ever. 27 years....

I constantly worry about a certain type of food being discontinued

I've got so much respect for you all who are struggling. My son has Autism. Thankfully primary school has been manageable. I'm dreading the transition to high school in September though.

For me it's that - I cannot take the bins out without a follower.
My house has a collection of sticks on the coffee table.
Every pen in my house is chewed.
We do not eat food with sauce.
I have to go outside to eat my crisps because they smell.
I will never change plans. Ever.

Totally understand.

Stopped buying socks with any form of pattern/extra stitching years ago - even just the word next in the bottom is a no.

Lost count of how many pairs of trousers I ordered for the start of school last year before we found one that felt comfortable - both feel of fabric and fit.

This year none of the school jumpers felt ok (they changed the content to last year), so dd hasn't worn one (school aren't too strict on uniform so hasn't been an issue).

Shoes/trainers aren't easy. We have previously tried on every shoe that could possibly pass as a school shoe in every shoe shop in town, and not found anything suitable - more than once.

Current trainers still fit but need a new pair as they are getting worn down inside. Manufacturer no longer have it in stock in a suitable size online so have searched online and luckily managed to find the same pair, in the same size in stock elsewhere. Just hope they fit ok (the other pair may have stretched and it is the largest size they do them in).

Clarks have discontinued the only shoes DS will wear. Super happy to find a few stockists online still selling them and, naturally, bought two in his size and another two the next half size up - glad I’d just been paid!!

Of course, the new shoes are still at the ‘feeling wrong’ stage and he was livid I’d put the old broken ones in the bin.

Talkingfrog hadn’t read yours when I posted! Shoes and clothes so so tricky for many.

The 2 takeout places in rotation recognize our order and question if we change it for any reason. Even if someone else picks it up for us.

going to multiple stores to find specific brands if something is sold out because the child will not eat if you swap and they absolutely will be able to tell, even if you hide the packaging.

I still only work part-time so I can be available as needed even though dc is old enough to have her own very part-time job.

so many pieces of clothing tried and discarded because they turned out to be unacceptable. But almost always after they were worn and could not be returned.

spending hours researching the perfect pencil, the perfect folder, the perfect anything because having the right tools makes integration much easier. Being willing to keep buying until we find the right thing.

“I’d like to invite you to not renew the ballet class for 4 year olds.”

also: spending an unreasonable amount of time making SURE, absolutely SURE, that the socks are paired up correctly