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To ask about ND masking in girls - school say she seems 'fine'

138 replies

seriouslynonames · 08/03/2024 19:31

My DD8 is in year 3. Waiting for private assessment for ADHD (GP suggested quicker than NHS esp as infant school at the time saw no issues).

She is extremely anxious all the time, about lots of things, and it shows up in her body in the form of unsettled tum and nausea. She has short periods most days of seeming more relaxed and happy, but spends much of each day on edge, nervous, worried or angry.

She says she hates school, doesn't want to go. Being there makes her angry, makes her want to scream. She feels nauseous or funny tum most mornings (also for weekend out of school activities) and goes to bed feeling similar most nights. Says school is too loud, too many strict rules, being told what to do all day, can't concentrate, friendship issues make he'd upset or angry. She feels the need to move all the time. She only enjoys extra curricular activities before/after school, plus art. She isn't struggling academically so far. She also worries about feeling or being ill at school or others being sick in front of her at school. That's a big issue at the moment.

When I talk to school they say she is doing well, gets work done to a good standard, isn't disruptive, follows directions, keeps her desk neat, puts her hand up, takes turns, is polite and helpful, gets on fine with peers and adults etc. they can see the fidgeting but that's it. They have given her ear defenders and a wobble cushion after I mentioned a couple of things back in the autumn, but would not have offered if I hadn't raised it.

At home we see such a different side to what school see. Extreme anger, aggression, destruction. Very low self-esteem and very worrying negative self talk. Constant anxiety and physical symptoms/feeling ill with it. Always moving, can't sit still.

She didn't make it to school Monday to Weds this week. Said she felt sick and tummy felt jumbled up. Said it was worse than the usual nervous feeling she gets so I took it at face value and kept her off. Tried to go in Tues but ended up coming home before school started as felt sick and looked green. Then Weds she seemed better so got ready to go in then it was too much, she just couldn't leave the house she was too nervous about still feeling ill and absolutely would/could not go, hates school, doesn't ever want to go.

Spoke to school today (she went in today/yesterday after a struggle) who want to address the school avoidance but repeated that when in school she seems 'totally fine'. And to be fair to school, when she comes out at the end of the day she is generally ok. It's only later in the evening when it all goes to s*.

I just want some views on whether it's possible for a child to mask so fully that despite me having been pretty open with the school about what we see and what DD says to us, that school just don't see anything? Surely DD couldn't make up all this stuff she tells us about how school makes her feel? We know the anxiety is very real and the anger. And I believe what she says about how school makes her feel. But then I start to doubt myself when school say how completely fine she is!

Would welcome others' experiences of masking please x

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EHCPerhaps · 17/08/2024 07:45

I’d just like to add some things we tried in case this helps anyone. The combination that has finally worked for us to get DC out of the safe space of home is- taking pressure off/low demand as daily default, jumping on any special interests we can- going to a one-off outdoor event connected with a special interest. Nothing regular, that’s too demanding. Organising very few social interactions and these only with kids we know as family friends who don’t go to same school. That’s been it. If I mention school it causes a full meltdown so this is just a strategy for the next couple of weeks until they go back.

Easipeelerie · 30/07/2024 13:30

When school say someone is fine, they mean fine for school’s purposes- no trouble for them.
Id forge forward with getting assessment on the basis of how she is at home.

seriouslynonames · 30/07/2024 13:27

@EHCPerhaps we had a couple of weeks of explosive anger towards the end of term and unfortunately that has continued now term is over. We are going on holiday for a week this weekend, and I think that's what's driving things - anxiety about the journey, the airport, the flight, the holiday home.... There is always something to cause anxiety which then results in anger outbursts.
It is so hot at the moment we aren't doing much as she likes outdoor things. But being stuck in the house is also a trigger. The heat is a trigger. If I didn't organise anything both my kids would sit around watching TV and resist going out (even the NT one who is a teen).
The resistance you are seeing may be inertia, it may be that they haven't chosen the idea for the day out, but as it seems they enjoy it once there it might be worth persevering but involving DC more in the choice of where to go /planning etc so they have some ownership of what you are going to do/feel like they are in charge.

Good luck!

OP posts:
EHCPerhaps · 29/07/2024 10:34

Are any of you finding the pressure of school term being removed has got your DC out of the mask/explode daily cycle? I’m relieved pressure is off but struggling with DC not wanting to go outside or do anything.

At home cor the summer holidays apart from some simple day trips like a trip to the cinema, or drive somewhere nice to have a bike ride and ice cream which are fought against but I think enjoyed once we’re there. I’m not trying to ask for the moon on a stick here with going for complex days out or travelling to new places, but I am really concerned about mental health and physical health from being indoors all the time.

NameChange30 · 14/03/2024 15:50

My DS is the other way around; autistic with ADHD traits.

There's a lot of overlap.

Giovannimilanese · 14/03/2024 14:41

seriouslynonames · 08/03/2024 20:04

Thank you. I will ask the provider we are using about possible signs of ASD when we get to the stage of actually talking to them (only been forms to complete so far). I guess it's entirely possible the person we have seen this far has missed it due to masking...

It’s apparently common to have ADHD with some ASD traits - my niece (now 12) has an ADHD diagnosis (inattentive type) with some ASD traits and sounds very similar to your daughter.
I’m not sure whether it’s an option for you, but my brother & SIL moved her to a private school and it was astonishing- she loves school now, a lot of the anxieties have disappeared. The quieter environment, acceptance of quirkier interests and zero tolerance for disruptive behaviour were game-changers.

wowsaidtheowl · 14/03/2024 10:38

We had some amazing support from CAMHS as well - they taught us both some strategies that have helped alongside the medication. Sometimes it’s hard to unpick what is ADHD and potentially ASD but it was all much clearer once she had a diagnosis and had started medication.

seriouslynonames · 14/03/2024 10:14

wowsaidtheowl · 13/03/2024 18:00

This sounds just like my daughter before she was medicated. Once she’d started taking methylphenidate her anxiety almost vanished. She still needs ear defenders for the noisy classroom and movement breaks but she’s happy and at school every day. Her psychiatrist says that more and more the research points to the anxiety being caused by unmanaged symptoms rather than a separate condition. Happy to chat more if I can help, I know how worrying and stressful it is.

That sounds really positive@wowsaidtheowl being in school every day and content /non-anxious would be great!
This week has been mixed so far, a day or two of some resistance but still ok to go in, and then last night she seemed almost depressed 'i feel sad, angry and fidgety but I don't know why' and much more resistance this morning.
I tried to talk to her last night (before the feeling sad) about what the worst and best things about school are, to have an idea of what to discuss with them. She does have some specifics but she said mostly it's that she just doesn't like it, doesn't like learning. She also said some of the teachers are mean and strict/shouty, she just feels angry and uncomfortable when there, daily friendship grumblings, individuals who irrationality annoy her, noisy classroom (a few others in her class already diagnosed ND). Will see how the school responds to all that 🤪

OP posts:
Ghostgirl77 · 13/03/2024 20:37

Definitely sounds like ASD with masking rather than just ADHD.

cherish123 · 13/03/2024 20:34

She may end of with dual diagnosis. A lot of autistic children mask and then let it all out at home. Masking is very common in girls and women.

Ialwaystry · 13/03/2024 20:32

slithytoveisascientist · 13/03/2024 16:07

This is an amazing thread and my experience echos so many of the others here:

We have an appt for DD with SENCO on Monday.

I have no idea what to be asking for as DD masks so well.

For instance they have a traffic light system for behaviour which i think is horrible and so shameful for DD, it really upsets her. I would love for this to be removed for her but not sure how they would manage discipline in class. Any ideas?

DD is desperate not to stand out and to seem 'normal' so refuses help like kick bands etc. I think she would like fidget toys but this allowance has been abused by her in the past - showing them off to other kids etc .

What could I ask the school for?

They posotive reinforcemwnts used to have golden star of each lesson, day and week in my child's primary. She hated it. If she put 100% and wouldn't get one she never understood.
So she was kilkingbherself every lesson to get one and come home every day upset.
I told this to the school and they wouldn't change it. Instead they gave her star of the week once!!. That was her last year of primary when she was already struggling.
I would find quotes and evidence of positive reinforecementa and how they don't work for everyone. (Literatire and books for teachers will help, as there will theorists who dont agree that it works for every child.

wowsaidtheowl · 13/03/2024 18:00

This sounds just like my daughter before she was medicated. Once she’d started taking methylphenidate her anxiety almost vanished. She still needs ear defenders for the noisy classroom and movement breaks but she’s happy and at school every day. Her psychiatrist says that more and more the research points to the anxiety being caused by unmanaged symptoms rather than a separate condition. Happy to chat more if I can help, I know how worrying and stressful it is.

NameChange30 · 13/03/2024 17:43

slithytoveisascientist · 13/03/2024 16:07

This is an amazing thread and my experience echos so many of the others here:

We have an appt for DD with SENCO on Monday.

I have no idea what to be asking for as DD masks so well.

For instance they have a traffic light system for behaviour which i think is horrible and so shameful for DD, it really upsets her. I would love for this to be removed for her but not sure how they would manage discipline in class. Any ideas?

DD is desperate not to stand out and to seem 'normal' so refuses help like kick bands etc. I think she would like fidget toys but this allowance has been abused by her in the past - showing them off to other kids etc .

What could I ask the school for?

Why is it "abusing" the fidget bands if she shows them off to her friends? Is she not allowed to do that? What about fidget jewellery?

I don't know about your DD but here's an example for my son: he always leaves it to the last second to go to the toilet and doesn't always feel confident enough to ask, so we asked the SENCO if he could have a "toilet pass" type thing and she agreed, so he has that now and I think it works well. I guess you could have a similar system for anything, not just going to the toilet - so if a child is feeling overwhelmed and needs a movement or sensory break or something, or just needs a quiet work with the teacher or TA, the school could provide a card for that.

I really struggle to know what to ask for as well, as it depends on the child's needs - if they mask it's hard for school to tell, and obviously we parents aren't there! I did take my DS for a private OT assessment and they had some helpful recommendations for school.

slithytoveisascientist · 13/03/2024 16:07

This is an amazing thread and my experience echos so many of the others here:

We have an appt for DD with SENCO on Monday.

I have no idea what to be asking for as DD masks so well.

For instance they have a traffic light system for behaviour which i think is horrible and so shameful for DD, it really upsets her. I would love for this to be removed for her but not sure how they would manage discipline in class. Any ideas?

DD is desperate not to stand out and to seem 'normal' so refuses help like kick bands etc. I think she would like fidget toys but this allowance has been abused by her in the past - showing them off to other kids etc .

What could I ask the school for?

Pekoe78 · 11/03/2024 23:11

The video above is a brilliant illustration of masking in girls.

Ialwaystry · 11/03/2024 23:08

purpleme12 · 11/03/2024 20:48

I have read different things about early help.
I have trouble trusting people anyway so that probably doesn't help.
Yes I do get worried that people/professionals will try to blame me/my parenting. Maybe that's just me being stupid.

Not stupid at all. I don't trust them either due to a bad experience.
I have one bow and it's on my terms.
I parent my child low demand now.
You are the expert of your child, not them.

Ialwaystry · 11/03/2024 23:06

seriouslynonames · 11/03/2024 21:56

Thanks @eduwot I already feel that we are pushing her to go in and that makes me a bit uncomfortable, I definitely don't want to get to the point of forcing her - I don't think I could, she is strong! The challenge is to figure out what school might be able to do to make it more welcoming for DD, if that's even possible. I don't think she will ever love school, and I don't know whether making school 'bearable' is the ambition I want to set. I am thinking home educating might be in our future - I don't want to rush to it too quickly in case we can make school work, but equally want to heed to warnings to not leave it too late... Such a balancing act!

It's a very hard decision.
Mine struggled from half way through yr 5. By secondary she was struggling every day and I honestly wished if acted earlier. I lost a lot of trust from her and I regret that.

Ialwaystry · 11/03/2024 23:03

eduwot · 11/03/2024 20:36

I just wanted to add that my experience of Early 'help' was shockingly bad. It felt to me as if the main reason for their intervention is to suss out whether YOU are part of the problem. Your family is basically investigated and then they decide what 'help' you might benefit from. It was decided that my child wasn't violent enough, wasn't suicidal and we were OK parents, so they did naff all. What the worker did do was baked some cookies with my child, and bizarrely, actually commented that the she could be prosecuted for school non - attendance! I have heard of it happening to parents, but telling an anxiously child that kind of misinformation is pretty unforgivable. Plus, she had fuck all understanding of neurodiversity or anxiety.

Most don't. I had one when my child was younger.
Now I'm in charge. I have an intense one and she understands how I parent my child now.

seriouslynonames · 11/03/2024 22:00

Kissmystarfish · 11/03/2024 19:32

I could have written this about my daughter!!!

she got diagnosed with adhd. We home educate her and it’s worked for us. However I realise this wouldn’t work for everyone else.

Good to hear home education is working @Kissmystarfish , I need to find out more about the options

Good luck @KateLizAn I hope the GP is helpful

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seriouslynonames · 11/03/2024 21:57

I am in two minds about Early Help, it's good to know there are positive stories!

OP posts:
seriouslynonames · 11/03/2024 21:56

eduwot · 11/03/2024 19:48

Yeah, I don't think a lot of school staff really get masking. Your daughter is basically holding it together all day and then it all comes out. The coke bottle effect.

My daughter was just like yours. Unfortunately, everything did come crashing down in the end and she took a long time to recover from autistic burn out. If she is finding school that hard, try and get to the bottom of what would make the environment OK for her to learn and be comfortable in. Some children aren't going to ever be OK in a mainstream school. For my daughter, it took home education for her to be able to recover and learn. She is a different child now and doing brilliantly.
Not everyone can home ed obviously, but that's what's working for us. I have enlisted lots of outside help that suits out not very large budget!
There are many ways to learn that don't involve mainstream school. There are some amazing specialist schools around too,
Don't let school bully you into anything. I spent so long forcing my child in; she spent everyday trying to avoid going in. The result was no learning at all. Don't leave things til they get totally out of hand, like we did. We wasted 2 years plus. Good luck to you both.

Thanks @eduwot I already feel that we are pushing her to go in and that makes me a bit uncomfortable, I definitely don't want to get to the point of forcing her - I don't think I could, she is strong! The challenge is to figure out what school might be able to do to make it more welcoming for DD, if that's even possible. I don't think she will ever love school, and I don't know whether making school 'bearable' is the ambition I want to set. I am thinking home educating might be in our future - I don't want to rush to it too quickly in case we can make school work, but equally want to heed to warnings to not leave it too late... Such a balancing act!

OP posts:
purpleme12 · 11/03/2024 20:48

I have read different things about early help.
I have trouble trusting people anyway so that probably doesn't help.
Yes I do get worried that people/professionals will try to blame me/my parenting. Maybe that's just me being stupid.

PaperCrane555 · 11/03/2024 20:46

Our early help were quite good. They attended CPA meetings and funded therapy for me.

eduwot · 11/03/2024 20:43

@purpleme12 It was terrible. It is obviously different in different areas and depends who you are triage to, but it was unhelpful and intrusive. I never want another 'professional' in my home again.

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