To consider telling others about dd's condition?

[Madreamigajefa]

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?

Yes I am, and another group as hers is the most common of the rare ones. It sounds very similar, although they may be experiencing different aspects

@Pinklimey do you mean the “no” post? I think OP was answering the question “is it Turner syndrome” - could be wrong

It will understanding much easier if you use the quote function

One of my dc had a classmate with similar difficulties and I don't know if the parents didn't want to acknowledge them or didn't want to share but the child ended up with no friends as the other children didn't know to make allowances and the last time I heard was on their 3rd primary school

I don’t see the need for secrecy here. There’s nothing to be ashamed of. She has a unique profile and people will understand for better when they know why she behaves a little differently socially surely?

At 4 I’d tell people to allow them to help her, definitely. You can be selective about it but I don’t think you need to be. It’s just a part of her, nothing to be ashamed of, like with ND kids. It just helps others to understand if they know.
If there are a couple of children she enjoys playing with, how about arranging play dates with their mums and if they seem kind, mention it to them. Most nice mums would listen and help their child understand how best to include DD.

I didn’t share my son’s autism diagnosis, for the same reasons, and with hindsight it was a mistake. People will form opinions about your child no matter what, but if they are informed they have a chance to correct / change the way they interact with your daughter.

I've been through this dilemma but with an older child. I agree it is their information to share if they want to and they have a right to privacy, but after my experience with not sharing, when the issue is so obvious, I've found it better to quietly tell people beforehand. It makes a big difference to the way people respond to my child for the positive, which is better for her. My child isn't aware I tell people.

You could just say your daughter has a genetic condition,which can explain some of her traits etc
Honestly if I said my son has 16p13.11 microdeletion syndrome most people would have no idea what I was talking about particularly if his symptoms where not as pronounced as they are.

My DD has ASD, but not diagnosed until around 8. I found that a lot of 4yo children are not as a socially aware as we project onto them. She can likely join in if she wants and will have others join her if she's doing something fun. I also found that there are a lot of kind children and they are very accepting. Once she settles into friendships, I'd tell the mums if they are nice.

TBH there are so many quirks in little children, I think people are just as accepting with or without knowing an official diagnosis. Unless she's actually mean, she'll be fine.

It sounds like you are a great mum, I'd continue to play it by ear.

Yes tell people so they can understand otherwise their just going to think she's rude and that's not fair on your daughter

If my child wasn’t responding because English was her second language or something I would tell people without hesitation. I don’t feel like this should be any different because it’s a medical condition. It’s not something to be ashamed of. It’s just a fact. Like “we are from Italy” is a fact. Lots of kids have a condition of some kind, from autism to cystic fibrosis. It’s not right giving them the added burden of feeling like it’s a big secret.

Instead of announcing a 'condition' that has many varied symptoms, why not just disclose about the specific symptoms?

'Amelia has auditory processing difficulties. Sometimes she simply doesn't understand what she's hearing. Can you smile at her and her say it again, that might help.'

'Amelia gets overwhelmed by groups, but she does really well one to one'

Of course you should tell people - in age appropriate ways of course. To her friends "she can't always hear what you say so she needs a little help". Does she use Makadon? Children would be very keen to learn some to 'talk' to her. They probably know some already from watching Mr Tumble on TV.
Children are so accepting and just take everything as a fact so knowing that Child A can't hear properly so 'hears' with hands, or Child B has legs that aren't strong so they use a wheelchair. That's just a fact about that child which to them is as accepting as Child C always wears dinosaur t-shirts because she loves dinosaurs.

I’m not sure as parents we should be disclosing private medical information to everyone our child goes to school with. The only people that need to know our those people responsible for the child (whether it’s teachers, school nurses, babysitters, grandparents etc). Otherwise, I take the view that the information is my child’s private information to disclose as and when they see fit.

I would. My DD has a friend who is being assessed for ASD and knowing this has meant we have encouraged her to persist.

The friendship is good for both of them, that DD learns not everyone thinks the same way and that some people need a little more time/patience/understanding. But she isn’t always easy to be friends with. So having that knowledge of “why” can be helpful.

I think I would hold fire on a lot of personal info, but instead perhaps leave it at DD's hearing is patchy. Or something very general like that, but enough to get the message across. IME, if you do disclose a medical condition, all the details and the name of it, kids will use the name of that condition for bullying (the kids who want to bully will use anything at all and the school will be able to do almost nothing)

Before my DD started at mainstream primary school at 4, the Head spoke to all the Children about how some people are different and that there are some disabilities that are not seen but can affect how people act.

She also has a genetic condition.

They also had a disabled person come in and they talked to them and also the Children were free to ask any questions.

This was a small village school and we had met all the Children that were in her class and their parents and every single person was accepting of my DD, she had and still has friends from that school and got invites to parties etc.

We have since moved her to a Special School which is better suited for her education, but would have not moved her for any other reason.

I do not understand why you would not help your DD to fit in, they are at school for a long time, it seems you are embarrassed about her disability - you should not be, it is part of her.

@ParisLondonTokyoSlough of course your child's medical history is private bit your thinking is off because there will be times when other children need to know. Not full details obviously but more a 'what to do if...' scenario. If a child has an epileptic seizure while in the toilets with classmates then the children need to know what to do - ie go to the nearest adult and say clearly and firmly and use proper terms - "Joe is in the toilets having a seizure" not a vague "Miss, Miss... Joe is having a fit"
Medical history being private is one thing but classmates and friends do need to know about things like when a child might need an inhaler or what an allergy attact looks like.

I’m not sure I agree. I say this because my child has a serious medical condition and everyone that needs to, knows. If he was unconscious somewhere, we would know because his devices attached to his body would alert us and his teachers. If a schoolmate went and told a lunchtime supervisor that he had fallen over or was having a fit, that would be enough for the lunchtime supervisor to know there was a medical emergency taking place since they know and have been trained about his medical condition. The other children dont need to know the specific medical terms since all the adults responsible for him know about his condition.

He is at the age where he is getting more self conscious about the condition and only tells people when he feels comfortable enough. I don’t override this but explain to him that to keep him safe, the people looking after him will need to know. He understands that but likes to otherwise be in control of the image he presents of himself.

as long as OP’s daughters teachers know what’s going on, they can encourage the other classmates to engage with OP’s daughter without disclosing her medical information to those children (unless OP’s daughter doesn’t mind such disclosure).

Your daughter is at a disadvantage by having this disorder and by your own admission it could get more difficult as she gets older. You have important information that could not only level the playing field, but could potentially give your kid a head start so that at the end of the race so is at least level with the other competitors.

Why on Earth haven't you already shared this with the school? Her friends? Social groups? Wet only get one chance to make a first impression and literally everybody in your child's social circle is likely going to think your daughter just doesn't want friends or worse, is ignorant. Then you are going to tell people about this disorder but their perceptions have already been formed.

I've got a disabled adult son and two additional needs nibblings. Is hard but they never ever come out on top ( or even in the middle) by adults not using EVERY SINGLE tool you have at your disposal to get them help and support. Especially with hidden disabilities. The world just is not designed in any way for disabled people ( which is shocking but it ain't going to change any time soon)

I haven't made my mind up? I had agreed to start on a need to know basis and am now figuring out if it's more in her interests to say something now I'm seeing that her response to others is different to her peers and thus needs more understanding. I wrote "No" only to the direct question of "does she have Turners syndrome? “ I am surrounded by people who are very private and do not like the idea of me sharing info like this, including dp, who would see it as wrong, which is why I am asking a wider community.

Definitely share. You don't want her growing up thinking she has to keep her condition a secret. This could lead to ab awful shame feeling. I've worked with children with all kinds of disabilities and a full embrace of their conditions is always recommended.

@ParisLondonTokyoSlough of course your child's classmates don't need to know the medical name or full details but there will be times when they aren't with an adult (in the toilets, going and getting some books from a different room with a classmate....) and the classmates need to know exactly what to do in a medical emergency.

The problem with 'labels' is that if you don't share the 'label' you are happy with then people will make up their own. I decided I would rather my children had 'labels' such as dyslexic, autistic, dyspraxia, ADHD rather than naughty, lazy, difficult, stubborn, rude, clumsy, weird etc.

OP, what’s in the best interests of your DD? If not telling people about her condition starts negatively affecting your DD’s life in any way then please do tell them about it.

Without this knowledge your DD won’t get the support she needs to develop.

What the other people think (including your DP) is irrelevant here.

You are your DD’s voice and advocate.