Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Thank you everyone

Sorry thank you 1hop

I think their argument so far is that she isn't medically unft for school as we haven't provided the right evidence

Northern, the LA is wrong for pushing this requirement to provide the perfect evidence onto you - see the second part of paragraph 12 in the government guidance that 1hopforward linked to. If it's obvious a child isn't able to attend school for medical reasons, the LA have a duty to step in - they shouldn't be saying 'oh no, that's the wrong wording', they should be liaising with medical practitioners, etc to satisfy themselves that the threshold is met.

It's one thing saying that they don't think DD qualifies because she's not ill, but saying that they've not got the right piece of paper is an incorrect interpretation of the guidelines.

I referred to this government doc when I complained that the LA had failed in their duty to my DD, and they conceded that they fucked up massively by letting bureaucracy get in the way of my DD receiving the education she's entitled to. I had to point it out to them, though.

Tbf at the time of my meeting with the EWO I wasn't convinced that CAMHS would back me up. I got the distinct impression that it was convenient for them to blame me for non school attendance rather than the illness. Made it easier for them to delay thectherapy I guess. Thankfully I have a more sympathetic therapist providing treatment now so hopefully things things will move forward.
Sadly our LA doesn't have the best rep for children's services so I could have my work cut out but thank you for the support.
The whole thing is a joke as on the one hand the school are saying its great she is finally getting the support she desperately needs but we still don't believe she is ill as her absense is unauthorised.

Thanks long

Real, welcome. Sorry to here you are having a difficult day. Are the school providing support? They could help socially and make adjustments in lessons. Could DD meet the Spanish teacher at lunch or break to do her speaking part, that way she doesn't have to speak in front of the whole class.

Northern, it can be incredibly lonely, there will always be someone on MN to listen. A GP appt. for you sounds like a good idea. Remember to look after yourself, you can't care for others if you don't.

As Longines says, whilst the LA shouldn't insist on specific wording or a particular form, it would be an easier fight if you had something explicit. That's because a diagnosis alone doesn't necessarily prevent attendance. Once you have the evidence if the LA won't provide education JR will remedy that.

Zoo, if you are reading I hope you re OK.

I feel like a bit of a fraud on here because my son actually does fine in school. He likes the routine of it, having a timetable, going to the same place at the same time for the same food every break and lunchtime. He gets unsettled by unexpected changes in teachers but not enough to make him not want to go in. Our problems are much more at home.

We recently decided that because we are getting on in years we should join dh's work private healthcare scheme at the start of the year. And here we are using it already, I'm so glad we decided to join. Ds is managing to see a counsellor privately really quickly while he sits on the lengthy CAMHS waiting list. We are lucky.

We have our first counselling session tomorrow, we have talked over the plan for how we are going to get there about 20 times today, we have written it down, looked at a map, looked at the building on Streetview, looked up the counsellor and all his info and his photo. I am preparing myself for many more questions about it before bedtime, which will be a late and fraught one because of all the worrying.

It really is exhausting, as you all know so well. Hoping for some downtime for us all this evening so we can recharge for tomorrow.

Thank you 1stepforward2back,** thankfully our DD goes to a very small school with excellent pastoral care.

All her teachers are aware of her anxiety but we've not told them about the counsellors suspicion of Asperger's. The Spanish teacher has been great and gives her the option to speak outside the class, my DD knows this is an option but worries questions will be asked by her peers as to why she has "special treatment." She has learnt to mimic the other girls around her to see how she should behave, then she comes out of school exhausted and the mask comes off.

We need to find a way to let our daughter know about her counsellors suspicions...I'm so in a quandary whether it will help (I think it will), she knows another girl who has autism and keeps saying I am glad I don't have autism so I know labels bother her. Thankfully lots of resources online are helping, I love the superpowers part of Asperger's, wow they are bright, special people!

I feel awful just going on about my troubles.

Reading through everything you are all going through, keep strong.

Hello everyone

I am one of those who comes and goes from this thread. I don’t mean to as I find it very supportive. I’ve read back through this new thread. We love SiX the Musical here too. In fact, DD1 is obsessed with musicals currently so we live in musical theatre land. I would really recommend Dear Evan Hansen. It’s about teenage mental health in a way, but the very first song is about how bloody difficult it is to parent anxious/depressed teens so I took my daughter along thinking I’d be mildly entertained and ended up crying in the first 5 minutes!

DD1 and I have seen CAMHS and they have been really good. I though they would tell us we were over reacting but after I’d explained it all they said it sounded really difficult and they would prioritise us because of the impact it has on family life. They have referred her for an ASD assessment but it’s a narrative referral as the tick-boxes don’t really give a good impression of her difficulties because she’s atypical and high-functioning.

Can anyone recommend any books about high functioning ASD in girls?

Noworries like you, we don’t have any problems at school. DD1 is very aware of not appearing ‘odd’ and has worked hard to understand the rules - however she really struggles when people don’t behave according to her understanding of the rules. She refused completely to speak to the optician the other week and I’m starting to think I may need to phone ahead for appointments and explain.

Does anyone else struggle with endless conversations about the same thing? I can literally listen to the same thing for 2 hrs then get distracted for 5 seconds and get accused of not listening/not caring etc...

I have been thinking a lot recently about the impact on us and her siblings. It is what it is but I’ve realised we’ve all adapted without realising and the other children would have had a mich different experience in other circumstances. Like other people have said, we can’t be spontaneous and we’ve had some pretty terrible experiences in airports and restaurants and stuff. DD2 and DD have missed out a bit on the carefree side of childhood I think.

That should say DD2 and DS

Hi Bigbus, my DD's counsellor loaned us a book called 'Nerdy, Shy and Socially inappropriate' by Cynthia Kim - a guide to Asperger's in girls. Amazon have it.

It has transformed our parenting with our DD who our counsellor suspects has Asperger's or high functioning autism. It also shows you how your girl views the world and how you can support her.

I actually feel like I am starting to get there in knowing how to communicate with her in a way that makes her feel comfortable, it's a great book.

she really struggles when people don’t behave according to her understanding of the rules

@Bigbus we used to have lots of this in primary school. Not so much in high school but it's still there. He hates when he thinks teachers are not being fair or following the discipline rules and structure.

Does anyone else struggle with endless conversations about the same thing?

Oh yes. So much.

I have been thinking a lot recently about the impact on us and her siblings

Me too. We do a lot less together than we used to, to avoid meltdown or 3 hour discussions about how things will work. And the copying of anxious behaviour, especially by youngest who is 7, when they see that behaviour getting lots of attention.

Another bad day...can't get DD to go into school today.

She has been crying all morning, upset stomach and overwhelming anxiety.

We had a day like this last week.
Not sure how to get through days like these and how to support her.

Thank goodness I only work part time so at least I can be here for her.

Poor girl, it's horrible when they are so upset and you can't help them.

Are you both just staying at home today or will you try again later to get her to go in?

DS used to miss lots of days in primary school (combination of bullying and anxiety) and we spent the day together outdoors going out for a massive walk and a cake. I figured lowering his stress levels even just at that moment in time must be doing him some good on some level.

But missing primary school is much less important than missing secondary so your situation is much harder.

Would she get dressed and go out for a walk with you? That's a very superficial suggestion and doesn't solve your longer term problem in any way I know, I'm sorry.

real it is hearbreaking. I really can't see dd making into school any time soon so yohu have my sympathy.
I think I am going to email CAMHS to make it clear just how much she is struggling.

The going for a walk idea is good. I may try it with dd as she has barely left the house lately.

Noworries, don't feel a fraud. Plenty of DC keep it together at school but fall apart at home. I hope the counselling goes well.

Real, I am sorry to hear it's a bad day. A supportive school makes all the difference. Do let them know about the suspected ASD. Masking is very common in high functioning females with ASD. Problems arise when the social demands increase and they can't keep up &/or they burn out.

Asperger Syndrome is no longer diagnosed, it all comes under the ASD umbrella now, but everyone's autism is different. All high functioning means is there isn't an intellectual disability. I have two with ASD. DD2, who is now at university, was diagnosed prior to the change and has an Asperger Syndrome diagnosis, and DS3 who was diagnosed after the change so just has ASD, though would have had HFA under the old criteria. DS1, the reason I joined these threads, doesn't have ASD, but complex MH problems.

Big, have a look at Tony Attwood, Sarah Hendrickx and Tania Marshall.

Northern, emailing CAMHS is a good idea.

If you haven't already those new to the thread should consider applying for DLA.

Thanks for replying.

I think she is sleeping at the moment. I will ask her if she would like to go for a walk although we live close to her school so she may not want to. She loves a sushi so maybe I'll suggest we pop out to grab one.

I just can't think straight at the moment, I am just all consumed with thinking how to support my daughter. I'm reading everything. I do have a younger daughter who doesn't seem to have the struggles of my eldest (they are polar opposites and tbh she keeps me going some days) as well as some work going on in our house, getting my youngest and her friends to after school clubs and a job to try and do. I really don't feel in a good place to try and keep all the balls juggling.

Going to make myself a cuppa a focus on something else for a little bit.

real I hope things improve. Can I just adk you how the school are handing her absense please.

Thank you for tips re DLA. I applied when she was younger but got nowhere.

However things have deteriorated and she is suspected to have an eating disorder aswell which I hadn't even heard of. I judt thought she was fussy. Grocery bill astronomic.

I just can't think straight at the moment, I am just all consumed with thinking how to support my daughter

It's so tough, I'm sorry.

I always figure that the professionals have to sort out the deeper issues because I just can't, apart from tinkering around the edges by writing every single detail of the day down in a diary and whatnot.

All I can do is try and make him feel calmer in the moment by taking him out for a walk, watching some rubbish tv with him, listening to him agonising over some small change in arrangements without getting annoyed, taking him for a swim, buying him his favourite food, just giving him a tiny break from school or whatever is giving him stress at that moment in time.

I just don't know what else we can do, it's too complicated for us parents to fix by ourselves. These problems are beyond what we know how to deal with and that is so hard to come to terms with.

real go and wake her up, jump in the car if you have one, get away from home and school and have a walk in the fresh air. Right now, at this point in time, that's probably the best thing you can do. (Says me, being no sort of expert at all)

Northernsoulgirl** well I've told the school office that she has an upset stomach (I suspect her period is making her particularly anxious and overwhelmed). However her tutor and deputy head both know she is in counselling for severe anxiety and depression and know it can overwhelm her. I work at her school and I can often see my eldest in the playground at breaktime from my classroom (she can't see me). I can certainly see the mask some of you mention. DD is a very different girl at school to the one at home. The school mask is a quite a confident and chatty girl (she even says I have to look confident as that's what everyone knows me as). When the mask drops at home she is anxious and overwhelmed. We have a good counsellor who spotted this straight away.

I think you are right, we need to tell her but I'm really now sure where to start here...there are lots of great things she does as a high functioning autistic girl, her organisational ability is quite frankly amazing! She is so calm in a crisis, her attention to detail and the effort she puts into her studies astounds me...she always does so well, and is selected to be an ambassador of her school (which she tries to do). So I'm thinking highlight these?

Definitely reapply for DLA - the Cerebra guide is helpful when filling the form in.

Is it ARFID northern? That is quite common in DC with ASD. We too spend £££ on the weekly shop. DS1&3 have EDNOS which is complicated by them having a medical a condition which means they need a high calorie, high fat, high protein diet.

Real, I would tell the school the real reason your DD is absent. You may need the evidence later down the line, and they need to know she is struggling attending to put support and interventions in place.

Yep it is ARFID 1hop Thank you

DD is different in that she just cannot cope in school and has major meltdowns, she has spent nearly every mock exam either with a panic attack or just crying through the whole thing or simply not being able to do it at all, I am very worried about how she is going to cope with her real GCSE's that are coming up.

She did miss most of year 9 because of her CFS and managed to catch up but between that and her anxiety we have both just had to adjust to the fact that she is doing less GCSE's and the grades for the ones she does do will be lower than her ability. I'm finding over the last few years that lots of things comes down to adjusting expectations.

When she's at home and I'm there she is a different child, she's funny and good fun, we spend a lot of time together and I only see flashes of the anxiety. It's when she's at school or on her own at home that the worst problems happen.

I really am dreading the rest of this year - GCSE's followed by a summer where she will be on her own a lot as I'm working then starting college and I have no idea how she will cope with that, I think the thought of college is one on her stressors, she's been at the same school since she was 3 so it will be very difficult for her I think.

I'm sorry I'm not much help in providing advice for other people but mostly I have no idea what I'm doing myself so just take each day one at a time and hope I'm doing my best.

I have had the sane experience indispair
She is fine most of the time with me or playing games with siblings but as soon as she needs to attend school she falls apart.