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?

woah sorry about the spam @Needmorelego - when I posted it took me to an error page and now there’s about 10 duplicates!

This is a real tough one OP. I'm currently working through it with my 12yr old. She has condition X - medical physical disability. Diagnosed at 2yrs old. We've always been very open about this because of its impacts. But it is only in the last 3? Years that my dd has come to terms with the facts/impacts herself. She has become known as the weird kid anyway. She chose to 'start afresh' when she moved to secondary school away from her primary classmates.

She has recently been diagnosed with 2 futher issues - these are educational needs. We've agreed that these are for her to talk about if she wants to - although I've insisted on full disclosure with school etc. But she has the choice whether to tell family/friends. She has largely chosen not to. I'm not convinced that this isn't adding to the stigma in her mind - but it is about trust currently and she has to come to terms with it all herself first.

In your dds case. Being so young, I think you have to disclose to some degree. As others have said you don't need to give detail but highlighting that she has some hearing issues etc will help her without taking away her choices later on.

It could alienate your DD.
I know that is awful however it happens, some parents discourage their DC from playing with the different DC as they don’t want them held back or forced into minding the DC with extra needs when there is a popular group.
At 4 lots of DC have problems with social interests .

If someone has a condition that means they sometimes behave in a way that would usually be interpreted negatively - eg ignoring people who speak to them, in your DD's case - then I definitely think it's helpful for all parties if people know. If people understand that she's not just being rude/sullen/moody, I think her life will be a lot easier.

Thank you. Yes I was answering is it Turner's, I may not have the hang of how to ensure my replies are attached to comments.

You need to make it clear who you are replying to op.

you don’t have to tell them the whole details just something like “dd doesn’t always hear at first” or “dd gets too nervous to reply sometimes so needs a bit more time/space/whatever”. I think you’re overthinking it tbh, holding back information is not helping her at all.

Keep it simple and say she has hearing issues. I'm assuming the school know about her needs

Please definitely speak to the teacher about this, they can plan and support your DD to build relationships and help her to self regulate anxiety. Other parents, can be a real help and support for you too. If you can build a little network of parent pals they will be in your dad's corner as she develops social and learning skills. There are so many diagnoses around, you'd be surprised. Good luck.

I'm in a similar position - I've sent you a PM.

In my experiences as a teacher of little ones, children are predisposed to be kind towards those who are more vulnerable, but they need to know the skills in order to offer that.
In classes I've worked in, I've sometimes sent the SEN child off with the teaching assistant to "do a special job" for 10 minutes, while I sit the rest of the class down and talk about how they can help care for the other child.
It might go something like "Jenny has something a bit different with her body, called Whatever. That means she.... She might sometimes do.... You might have seen her do.... You can be a good friend to Jenny by...."

You don’t have to name the syndrome, but for example conditions such as Noonan Syndrome can vary greatly in the way the individual is affected, and often the differences either become greater or even out. At the moment the best and gentlest way forward is to begin to use the syndrome name in safe circles, so you can see how you feel and the reactions you get when you are putting it out there. In the meantime it will ease your daughter’s path immensely if you develop a response you are comfortable with eg “ she struggles with interaction and she gets easily overwhelmed until she feels safe..” or so on. In my experience of a dd with a genetic condition people do notice but don’t want to cause offence, so offering a suitable level of information helps not set them up to fail, and can often help find a level of emotional and practical support for all of you. Protecting her privacy and dignity can be done still, but don’t close yourself off either. 💐

I absentmindedly ticked the wrong option, and now find I can't switch my vote over to the other one. I thought under the old system before the reboot we used to be able to. surely?

We moved somwhere and the little kid next door became friends with DS. Over the years my DS has gotten battered either on purpose or accidentally or hurt through rough play. I know the kid has 'something' because I know his DM brought him to some unnamed assessments. She didn't choose to share and that's her business but frankly I was fucking done after a few years of knowing there was a diagnosis yet I'm expected to magically know without that why my kid has yet another bruise or cut or how to manage play dates so that that kind of thing doesn't happen. So fuck that. They do not play together any more.
Here's the thing - we have several disabilities in our wider family. It's really important for me to ensure DS is as inclusive as possible. I would have worked with her if she had just let me know to look out for key situations where he'd get overwhelmed. I wouldn't have even needed to know what he had - just how to help manage an outburst when he was in my home!

We've moved a little further away and her DS has lost one of the few friends he had and well on the way to losing the others in school. And it's such a pity.

You're not disclosing or gossiping. You're helping others to understand how to communicate with her. If they don't know they need to use different communication skills, they just won't. People don't just 'know'. The vast majority of people won't ever need to have consistent social interaction with a person with communication differences. Your daughter might be their first experience of it. You have to tell them, to educate them, to help your daughter have social interaction. This is about, and FOR, her. Stop making excuses and apologising for her. She has to fit into the world, but the world also has to help her do that.

OP - years ago I was in a mum and tot group with a woman whose child had a diagnosis that made things difficult for her. She was unable to interact with the other children in quite the same way. This woman confided in me, and told me that her husband had forbidden her from telling anyone. The husband didn't want the child to be 'labeled'. (For brevity we'll ignore the dick husband and his 'forbidding').
The result was that the other (perfectly lovely) mums ended up pulling away because their kids didn't enjoy being with this little girl. I was able to front-load my kids ("Sally finds X difficult, so when we play with Sally we need to remember to give her time to Y and Z") and it was fine. Children are very understanding and accepting.