AIBU to sometime be extremely jealous of parents with NT kids

[Studyinghell]

Just tht really, not that I’d wish his personality away or anything like that. But when things are hard Im so jealous of parents with NT kids and kids with no medical conditions

I know, it is hard AamdC, ds 6 is currently in mainstream infant school, and is 2 years behind academically and socially. I deleted some mums from Facebook, as I just could not tolerate the minute by minute updates on their child's fantastic academic progress.

I hear you @Aeroflotgirl i do the same i also hide threads on here when people talk about being disapointed that their child only got Band C,s at Alevel or such like

YANBU. My DD has just started special school on Yr 6 after perm exclusion due to her behaviour. All my friends kids are doing the 11+, excelling at extra curricular activities. DD is desperate to be ‘normal’ and we can’t make that happen for her.

We are very lucky to have a loving, articulate, bright child but her extreme anxiety and challenging behaviour is utterly exhausting to live with. I worry she will never function independently as an adult due to extreme demand avoidance. So much judgement from schools about our parenting as well. None from HCPs thankfully.

And anyone who says ‘you are so strong, I couldn’t do what you do’ had better stay well out of my way.

@Leavesorange you would be surprised. Kids are horrible. I know everyone is fighting their own battle and all that but when your kid has been pushed face down in the urinal again and can’t/won’t twll you who did it I lose sympathy. There’s a couple of mothers who I just can’t talk to or look in the eye because they’re little darling had wet sleeves but no idea what happened. Between that and the mother who told everyone it wasn’t fair to invite ds to the boys birthday parties because it wasn’t safe for him it’s a miracle “a mother in prison” hasn’t been added to ds’s needs.
That thing about god sending special children to special children makes me rage. Imagine if we went about saying “oh your child is school captain, top of their sport and can play grade 8 cello. Must be because you’re shit and needed an easy ride”

I’d take away DS’s SEN in a heartbeat, even if it changed his personality. Let’s face it - his life would be much much much easier if he was NT.

I was listening to a friend talk about her child of the same age and what they were doing - friends they’d made, places they’d been invited, sleepovers, how they couldn’t decide which ten children to ask for their party because they had so many friends.
My ds has no friends. He’s never invited anywhere. Ever. Now whole class parties have stopped because they are too old and just choose a few friends he never goes to parties. He can’t go for sleepovers or on the residential trip because he wouldn’t cope.

So I don’t care if people flame me for it, I’d take the additional needs away and change his personality if I could because to be honest he’s deeply miserable and it’s only going to get worse.

There will be millions of people wishing they had a child at all

Yes, that's true, but how is that helpful / relevant? FFS

I actually feel thoroughly exhausted right now . There is very very little support for children or parents whose children have Sn’s

There is no understanding no support and a fight for everything support, access to Camhs , education , echp, dla. It is only long battle . That before we actually deal with our children

So yanbu

I take my hat off to all parents who’s children have additional needs. I have no idea how I would cope, obviously I would as it would be my job to as a parent but the stress you must be under even on better days.

I admire how strong you have to be to get though each day you are all amazing people/parents.

@LeavesOrange at this point I have no idea whatsoever what’s happened to him.

The twins were born 5 weeks early by emcs because he had IUGR and stopped moving. Within a week or two he was diagnosed with something called hyperinsulinism. Spent two months in nicu getting it under control with medication and he rarely had hypoglycaemia after that. He was under OT due to low birth weight but they were really pleased with his development and said he was even ahead in some areas.

Around 16 months old they took him in to hospital to do a controlled fast and they found that his insulin levels were now normal so he could come off his medication, but his blood sugars still drop if he doesn’t eat regularly so we manage it with food.

At 17 months he started walking and the OT discharged him.

One day he was sitting as normal playing with his shape sorter (a complicated one, about 12 shapes and he knew where they all went).

The next day he just walked up and down, spinning, chewing on stuff. He hasn’t independently played with a toy since. All he does is run around and chew stuff, eat things he shouldn’t, pick up anything he can find and try to eat it.

He has a squint and I thought maybe that was related so he saw an ophthalmologist. They diagnosed something called Optic Nerve Hypoplasia which means his optic nerves haven’t fully developed. But that would have been from birth so wouldn’t cause a regression. They did an MRI to rule out a related neurological and endocrine condition which he doesn’t have. They did find a specific type of brain damage but it’s mild and again would have happened neonatally so they’re saying it couldn’t cause this regression.

He’s now seen child development - they’re running more tests for metabolic and genetic disorders but I haven’t heard of anything that causes regression like this. I know regression is a red flag for autism but again I haven’t spoken to anyone who’s experienced anything like this.

There were no injuries, no vaccines, nothing like that around the time of the regression. The only change was coming off the medication he had been on from a young age but they insist it can’t be related.

I have no idea what’s going on. I don’t know if it’s going to get worse or better, or if he is going to get those skills back. We don’t know how much his vision is affected until he can talk, and I don’t know if he will. Basically, I’m shitting myself at this point.

chillpizza parents of SN children are no stronger than anybody else. It is fucking hard and a lot of us are desperate for help. We don’t get magical coping abilities delivered with our SN children.

Chillpizza im sure you mean to be kind but special needs parents are just like everyone elsec we are not amazing or strong , sometimes i for one feel like im not coping , bit you do what you have to do because well who else would,? And becsuse ultimatley you love your child .

My DD has just started special school on Yr 6

Same here. I hope it's going well for her. I was really worried about special school and all the stigma and the bloody gossips who've never walked a yard in my shoes but it's making such a difference to be in the right environment.

I have three children, one was born with a medical condition, and another has a fairly severe mental/behavioural disorder. The vast majority of people I know continue to produce perfectly healthy children with no issues whatsoever- I know someone with EIGHT children with not a thing wrong with any of them. It's hard, and it's perfectly ok to feel it isn't fair. It isn't fair.

I'm so sorry sinkgirl and all others who find it hard. Wishing you strength.

YANBU. I often feel sorry for myself as I am widowed parent to two small daughters. But they are both NT. I think having a child with additional needs would be much, much harder, even with a partner

@SinkGirl my ds was diagnosed very young, he was given a pretty bleak prognosis, but he has far surpassed this, probably due to early intervention, so a early diagnosis can be a good thing

grobags you are DEFINITELY allowed to feel sorry for yourself

My DS2 has global development delay/suspected autism. I love him but there’s so little I can take for granted about his future. Like, it’s no longer reasonable to assume one day he’ll move out and live independently.

I’m worried he won’t be accepted into SN primary school - he goes to the SN preschool there and has OT sessions there and it is the loveliest place with tiny class sizes. I don’t want him to be chucked into mainstream to be the odd one out in 25-30 kids. Sorry if that sounds bad.

DS1 is a year older, and I can see the gap in development widening. Sometimes DS1 wants to play with DS2 and cuddle DS2 and can feel quite rejected that DS2 won’t/can’t.

Its so unfair, someone like the Radfords have 21 kids without SN, and I have just two kids with SN .

To be fair, with 21 kids would they even notice ...?

DSwas overlooked in a class of 25 when he was younger because he more or less sat in his seat, didn't kick off or smash the place up, and was more or less keeping up with the work so he didn't attract too much attention to his SN as they were at that time and the teachers didn't go looking for SN because why create extra work? It's only when he got older that the gaps between him and his peers widened, the work became too difficult, and he couldn't figure out how to carry on masking as effectively. That's when school realised it wasn't actually a parenting problem like they'd been claiming it was and that I was right when I said there was something more going on with him.

I imagine having 21 kids is similar.

I guess, but school or professionals coukd pick up on their kids.

EwItsAHooman
What were/are his special needs?
I would never have guessed from how you've described him.

tbh I always think Thank Goodness none of the Radford kids have SN, doing everything we do plus looking after the other x number of children?

High functioning autism just means that there are no associated learning difficulties (though it was autism rather than aspergers in our case as he had speech delay) That obviously brings its own issues, especially in regards to a suitable school placement.

I think it does imply that it is just mild though.