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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To consider telling others about dd's condition?

65 replies

Madreamigajefa · 26/04/2022 00:47

Dd is 4. She has one good friend at school so far, but she doesn't always reply when people speak to her (including the friend) and already other children have stopped bothering with her or can do things which are a bit mean to her. She has a rare chromosome disorder which means it's highly likely her not responding is a result of associated high social anxiety levels, plus on-off hearing issues, and she has an extremely high likelihood of future learning difficulties. We agreed before to keep her condition on a need to know basis, thinking of it as her information to share as she gets older, but I am worried now that she might end up socially excluded and even bullied because of how it comes across as blanking everyone. She seems to get on a lot better one on one with other children, but more than one and she's looking for an escape. AIBU to think about telling a few more people and thinking it might help, or am I setting up my child to be more isolated and for things that she should have the right to disclose about herself to be spread throughout her peers' parents before she's even old enough to understand it herself?

OP posts:
Flamingoose · 26/04/2022 00:56

I'd be inclined to share it. In my experience people are kind and likely to prime their children to give your daughter space / time / whatever she needs.

dipdye · 26/04/2022 01:00

Yes, I'd share

Nandocushion · 26/04/2022 01:28

Definitely share, especially with the teacher but also with parents you trust. Don't wait for her to be ostracised by everyone for blanking them etc because you think you should leave it up to her to "disclose" - it will be too late by then.

SpidersareTapdancing · 26/04/2022 01:50

If you don't share it with people in her life she's going to be written off and not have the same opportunities as other Children.

You're doing her a disservice by not telling people.

How sad

Weatherwax13 · 26/04/2022 01:56

Definitely share this information. She'll be so disadvantaged otherwise. I assume the school are aware?

Kanaloa · 26/04/2022 03:21

Sharing it appropriately makes perfect sense. Even in a causal way ‘oh sorry Amelia sometimes struggles to respond because of her x condition. We do xyz to help her with it!’

Outoutoutshout · 26/04/2022 07:09

Is it Turners Syndrome?

Mamma3556 · 26/04/2022 07:16

My preschooler is autistic. I'm not afraid to talk about it with people but I struggle between wanting to respect his privacy and wanting to explain his behaviours to people who don't understand.

I'm getting around it by talking quite generally - "X doesn't feel like talking", or when it was to do with say mask-wearing, I'd say he couldn't because of a medical condition, or he wasn't permitted by his doctor. It doesn't always work but it's probably better than trying to pretend he is normal but rude or disobedient.

inappropriateraspberry · 26/04/2022 07:16

Why wouldn't you? You can't expect people to understand her behaviour if they don't know what is causing it.

Sexnotgender · 26/04/2022 07:18

It’s need to know. And they need to know.

FusionChefGeoff · 26/04/2022 07:18

Kanaloa · 26/04/2022 03:21

Sharing it appropriately makes perfect sense. Even in a causal way ‘oh sorry Amelia sometimes struggles to respond because of her x condition. We do xyz to help her with it!’

This is perfect - giving them the information AND a solution / suggestion at the same time. Don't let people dwell on it but lead them straight into dealing with it instead.

Original poster
Madreamigajefa · 26/04/2022 07:19

No

OP posts:
ENoeuf · 26/04/2022 07:21

Why wouldn’t you?
because if you stay in the same place at some point your child is a teenager and objects strongly to being identified as having difficulties/ is pissed off you’ve shared it widely etc.
so I think your need to know is very sensible. I would probably do play dates and ration information - ‘her hearing is being looked at, so I’m worried she comes across as ignoring people’ would work with most parents. School is different and you’d be doing a disservice not to share.

EmeraldShamrock1 · 26/04/2022 07:22

Yes.
Though in my experience they'll learn anyway, they'll probably tell their DC too, at 4 lot's of DC aren't interested in other DC.

InvincibleInvisibility · 26/04/2022 07:23

Its a tricky one but I do share my DSes diagnosis a little bit. Mainly because i don't want them thinking its a shameful secret (both have ADHD and dyspraxia diagnosed at 9 and 7) and I want other adults to understand that they can't always control their impulses and to explain DS1s extreme anxiety and DS2s major hyperactivity.

They don't have any support at school (its a long story) but their friends support is invaluable

EmeraldShamrock1 · 26/04/2022 07:25

@ENoeuf Great advice some parents are more immature than their 4 y.o's my Ds doesn't know he has ASD, all his peers know because their parents told them.

x2boys · 26/04/2022 07:27

My son has a rare chromosome disorder,the thing is how it affects a person varies massively ,my son has severe autism and learning disabilities,the chromosome deletion is thought to be the underlying cause,however some people are only affected very mildly if at ,all some also have health issues ( which thankfully my son does not )
I think I would continue to explain on a need to know basis,are you a member of Unique ?

Pinklimey · 26/04/2022 07:27

Okay, that was very final. Why ask?

ENoeuf · 26/04/2022 07:29

EmeraldShamrock1 · 26/04/2022 07:25

@ENoeuf Great advice some parents are more immature than their 4 y.o's my Ds doesn't know he has ASD, all his peers know because their parents told them.

Yes I’ve learned the hard way. See also: anything else you confide in someone about re your child may not be treated in confidence.
its not shameful obviously to have any condition but some are prejudged and it’s ultimately your child’s information.

InvincibleInvisibility · 26/04/2022 07:31

An interesting story about Ds1 (with Adhd and dyspraxia). He's been in the same class with the same large (14!) Group of friends since he was 3 (not UK). He's popular cos he loves playing any physical game and will happily follow someone else's lead (and hes a nice kid, never insults anyone).

Before his diagnosis , he went through a difficult patch age 7-8 where he would get extremely angry (particularly if something was unfair).

His friends all knew how to "manage" him - stepping back to leave him space or stepping in to get him out of the situation when he was angry (he never totally lost it at school thanks to his friends intervening).

When talking about it, his best friend just shrugged and said its DS1. He's my friend. We love him as he is. Amazing from an 8 year old.

DS1 is now 10 and still friends with them all.

Original poster
Madreamigajefa · 26/04/2022 07:48

Because it is a condition that we are told "some people are fine and don't know they have it, others have multiple medical complications, but these are the 183 most common things associated." and so if she wasn't to show any of them except medical ones that get handled outside of school then it would feel like gossiping about my own child. Yes I told the school, and I made a decision to communicate with them daily, but they haven't raised concerns about any of this, its from what I have observed myself. Last parents evening they mentioned that she plays alone but seems happy if best friend is not there, the term before all the children were still identifying those core social skills and she just doesn't seem to have followed along as much. Also because of my experience early on when sharing anything, people who would assume that she was not smart or capable. One grandmother has even given the "are you sure she really has it? “ because her challenges aren't as pronounced.

OP posts:
SleeplessInEngland · 26/04/2022 07:52

Ok, so what advice do you want if you already made your mind up?

Knittingchamp · 26/04/2022 07:59

You definitely need to share this. It isn't shameful or gossiping, it's your unique DD and she has a unique profile, and knowing what you know puts her at a distinct advantage to having never gotten the diagnosis. Knowledge and information is power, and enables other kids and teachers to understand her better. It makes for a more understanding and compassionate environment all round. There's nothing worse for a kid than being misunderstood and sharing her neurodiversity will stop that happening. I can't see the benefit of keeping it quiet and you'll find as the years tick by, she might face much bigger challenges and it'd help her to be supported through it by people who know and understand her situation

DolphinaPD · 26/04/2022 08:00

Madreamigajefa · 26/04/2022 07:48

Because it is a condition that we are told "some people are fine and don't know they have it, others have multiple medical complications, but these are the 183 most common things associated." and so if she wasn't to show any of them except medical ones that get handled outside of school then it would feel like gossiping about my own child. Yes I told the school, and I made a decision to communicate with them daily, but they haven't raised concerns about any of this, its from what I have observed myself. Last parents evening they mentioned that she plays alone but seems happy if best friend is not there, the term before all the children were still identifying those core social skills and she just doesn't seem to have followed along as much. Also because of my experience early on when sharing anything, people who would assume that she was not smart or capable. One grandmother has even given the "are you sure she really has it? “ because her challenges aren't as pronounced.

But she's showing issues now Confused

I find this a bit ridiculous tbh.

DolphinaPD · 26/04/2022 08:02

Why wouldn't you tell people if it will make her life easier.

To a pp above, she wont be able to identify her way out of a condition she has.

I personally wouldn't be all cloak and dagger about it. Accept her as she is and stop trying to keep it shameful secret.