No one is telling me the truth about DD - potential SEN

[Oldtimesofmine]

I have some worries about DD (5 yo - in Reception). Since she was about 3 yo she's been flapping her hands and making strange grimaces. We thought this is just a little quirk that she'll grow out of, however it's getting worse.

Her nurseries (went private in lockdown, then state pre-school) never mentioned anything which made me think she didn't display these behaviours outside home.

She then started her state school and again no one mentioned anything concerning. She has been doing very well academically and is very compliant at school. For various reasons that are not relevant yo this post, we decided to try a private school.

When she went for her taster day at the private prep they mentioned her hand flapping, grimaces and her fear of the toilet flusher as they suspected some SEN that they were not able to provide support with. This was the first time a school has given me some sort of honest feedback.

Fast forward a few months, she's in her private prep which she absolutely loves and I appreciate everything they do for her to make her transition very smooth and fun. However her teacher (who is lovely, warm and positive) is not willing to tell me much about this hand flapping or grimaces or any concerning behaviours. She is saying she does it 'sometimes' but snaps out of it as soon as they call her name. I know they all obviously see it but because she's not struggling with school or friendships they basically don't really want to talk about it.

I've noticed other things in her behaviour at home and I'm trying to keep a diary about everything in case we need to go for a diagnosis at some point but I find it really hand to get an honest feedback from anyone (she also does gymnastics and drama outside school) and they always say oh, she's fine! She's great!

When she left her state school her previous teacher said oh yeah, she flaps her hands, she covers her ears sometimes as the classroom is terribly noisy but never said anything for 2 terms.

Is this normal in the UK? How do you push for feedback and push through this sugar coating as don't think it helps anyone?

Probably state school not concerned if she was not academically behind and can function socially (not disrupting others). It's when their learning is delayed and/or the child regularly disrupts the learning of others that they will become a priority for further support. I'd definitely get her assessed (though a considerable wait if through NHS) but I'd not expect a great deal of extra support/advice other than maybe some sort of sensory diet from OT, speech therapy if needed etc.

Thank you all for your comments and advice, I'm taking everything on board.

I do worry that her current school which she absolutely loves are not equipped to deal with SEN if she ever needs that support in the future. They did mention (before meeting DD) they don't offer ASD or ADHD support, so they won't take on children who might need it, hence they questioned her behaviour after her taster day. But more atypical behaviours are obvious now, so I really don't know what the future holds.

For instance last Thu she started an after school club. When I was collecting her there were about 15 girls of Reception and Y1 waiting for their parents and while all these girls were at the gates looking out and rushing to go, DD was at the back away from everyone 'stimming', pulling those grimaces and quietly talking to herself, hasn't even noticed me. It looked worrying. I called her name several times, finally after a few minutes she snapped out of her 'thing'. This is really not the child we used to know.

I think sometimes these things become more apparent when children are in school or nursery. The environment is more demanding. The stimming is also a way to soothe. It is also difficult for schools to suggest all is not well. Parents generally do not want to hear it. They will have seen the same things. They often say they don't want a label. If they do not want a label they will play down the concerns when they see the GP. I think if you have noticed you may need to take the lead here.