Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Always the letter is here. why don't you think you are experienced enough? The first step is a relatively low bar and designed so parents can apply themselves, DS being out of school demonstrates he has significant needs. All waiting for school to apply does is delay DS getting the appropriate assessments and support, especially when you have said you "can't see him going to his new school for a long while". Also, if you are refused only parents can appeal. 5hrs 1:1 really isn't the equivalent of full time, homework doesn't count.

If you could persevere with the earlier waking and earlier to bed it would help long term. Have you had social care assessments - a carer's assessment for you and an assessment via the disabled children's team for you?

Muddling under the SEN regs 6(1) medical health care advice should be sought, but if here's someone specific you want the LA to approach its best to request it. We've from s dual care should also be sought, "not known to the service" is not an appropriate response. If you haven't heard you should chase the LA - depending on what week you are on IPSEA have a model letter you can use.

If the LA are going to argue DD's needs are not educational they will do so regardless of what assessments are carried out, it's a common line. Anything that "trains or educates" is educational, therefore should be in section F, including things like SALT, OT, CBT, art therapy, physio etc. There is case law that outlines this.

@1leapforward2back - thank your. Will request the LA seek advice from the people/services mentioned the other day (SALT, Sensory OT etc). I was just wondering if DD should have social care assessment (or we should request) in interests of thoroughness and in case there were therapies that might come about as a result. Not sure where recommendation for mentoring, socialising activities might come from. Probably overthinking things. Have had letter today from LA confirming needs assessment agreed and details of who they o tend to contact (not as many as I plan to ask for).

On a positive note DD2 has been in the garden briefly 3 days in a row and eaten 1 meal with the family as well as being dressed every day this week so far!

muddling yes, I think DD should have a social care assessment, one should be undertaken anyway but ask to be on the safe side. Don't accept "not known to the service" as a response either. I forgot you have only just been accepted for a needs assessment, I thought you were further on, in which case it's obviously too early to complain assessments haven't been carried out.

Yes Leap, I am getting ahead of myself but simply don't trust leaving anything to chance in this process.

Muddlingdressed everyday,go outside and eating a family meal are all wins worth being proud of!

I can't scroll back on my phone but good luck on the bra fitting.a treat after deffo worth it
I let her be)decompress.spent most eve D's let her do own thing rather watch her fave TV show tog
Eatings minimal)going badly.sleep habits awful refusing try settle early as to anxious
I think her constant distraction failing let it peak then trough is making her feel on verge panic all the time and intend test the theory at weekend...
Hope everyone has a small win today
Jump how's D's settling into school?

We had a couple of minor breakthroughs/realisations yesterday. The morning started off not too bad, but as soon as DD got out of bed her mood dipped dramatically to as low as it's been for quite a few days. We managed to get her out for a walk by lunchtime, which was difficult to start with, but after half an hour sitting on the beach she started to chuck stones into the water and gradually her mood came up. So it was a good proof to her that going for that walk, even when it's really hard, really helps.

The other big realisation was around food. She struggles with interoception - doesn't really know when she is hungry - even at the best of times. When her mood dipped yesterday she hadn't really eaten for almost 24 hours, apart from some sweets that her granny sent. It really hit us that she needs to eat 3 times a day, even if it's not 'healthy' (so long as it's not just sugar!). I have just taken her up a milky mocha and two slices of bread, so we'll see how that helps in getting up... Zoo - we have found with food that if we can tempt her to start eating, she will often eat more (and better food). DH did a Tesco run last night and got things like garlic flatbreads, dough balls - tempting dryish carbs that she can manage even if she's 'not hungry'.

School seems like a very long way off at the moment - either online or offline. Just existing is hard enough. But I'm taking the small wins!

Lots of good progress being made recently by DC on this thread, I hope it continues.

Muddling that's understandable. Never trust the LA.

Bubble your first paragraph is why leaving they house is non-negotiable here, even if it's only the garden. Sometimes DC can't rationalise what is best for them. We find it is 10 times harder to restart something if they get out of the routine of doing it. Avoidance breeds further anxiety and you get entrenched in a vicious circle f being in a heightened state.

Meals and snacks are structured too. DS1&3 have EDNOS and due to a medical condition they and DS2 need a high calorie/fat/protein diet so they have to eat. We do 3 meals and 3 snacks using the magic plate method.

Zoo DS3 has had a mixed start to school, starting a new school was always going to be wobbly. There's been a few tears, he didn't attend assembly and struggled with the noise and busyness. But he has received some house points, loved some lessons and I've received emails from his 1:1 and the SENCO with mostly positive feedback. Oh, and his shoes are still the wrong ones - I told him if they are still wrong in a few weeks we'll get new ones which triggered crying because he doesn't want new ones.

jump sounds about right about the shoes.we have had similar before!

Even though I realise it's not about the shoes it's bloody frustrating Zoo.

Hi all, do you mind if I join? I posted on a previous thread re ds 12 with school related anxiety and I'm getting to the point where I'm struggling to cope.

Looking for advice re what to do when they won't engage in help/support? He has no underlying diagnosis, started a couple of years ago with general and school anxiety, general anxiety much improved but school anxiety remains, he had made progress in primary school but obviously the recent transition to secondary school has set him back (which we expected).

We've been very proactive at getting support for him all along including private therapy but he doesn't want to engage anymore and just gets angry with us. I've advocated strongly on his behalf to set up as much support as possible and new school sendco are supportive and really bending over backwards to help him settle. He's mainly in the sendco room with the odd trip to stand outside a classroom but they can't get him over the classroom threshold even for a few mins with support. They tried to push him a bit more to go into class for 15 mins yesterday which resulted in a real struggle for me to get him in this morning.

I understand his anxiety and how hard it is (been through similar myself) but I'm struggling to know how to handle him, we've been so supportive and understanding but he doesn't see that at all, he's very negative. I'm struggling with my emotions, I hate to see him anxious but if I'm completely honest I do believe he is also at times choosing not to help himself. He's not eating and drinking at school, won't engage with us or the school much or try any of the strategies we know have helped in the past. Being gentle and removing all pressure/expectation doesn't help him but I feel massively guilty and unsure whether I'm doing the right thing when we are firmer.

So sorry for the length of this but grateful for any advice offered

starry welcome
I'm not sure where to start really.
Are you sure there are no other underlying issues?
Are there particular things that stress him out more than others?
What has he gained from engagement?does he grasp mechanics of anxiety and how it affects him?
After those options it seems you have two choices-

1. let him take control- to his may well lead to reduction of things he chooses to do avoiding situations etc
2. keep pushing on areas it matters.for school I've learnt don't let things slip.once they have time out,returning is very very hard.its bloody hard fighting the same battles day in day out.i am tending to go for facts having fallen down path one and am now trying to redirect things..it's the law you attend school and we have to follow the law.i got this from SEN worker at D's previous school,and it seems to be working to a degree herethere are still tears,yelling at me etc.but school happens Covid has taught me school isn't just education,it's socialising and skills of that,self esteem and independence all come from being in a school setting and if you child refuses but has no replication of these factors world's shrink VERY FAST.before we know it don't want get up,get dressed,go anywhere and then you are on a back foot trying to establish things again

Also have you other DC?and help in RL /family etc

It's exhausting caring for an anxious child.what do you do for time out/yourself?

Are you sure it is won't engage? Usually it is can't. DC with MH difficulties often focus on the negatives. His anger may be because of frustration at being under to communicate his feelings and needs.

What have you tried so far? Would indirect therapy help e.g. art/music/equine/Lego therapy... where the focus isn't on talking? Did DS have any transition visits before the summer holiday? What have school been doing to help? What specific difficulties are there at school? Have you thought about applying for an EHCNA?

Have you sought any counselling for yourself?

Thanks for your replies zoo and leap and some really valid points.

We haven't had him assessed for anything underlying, I've discussed with some of the professionals involved in his care and there's nothing that seems to indicate this but I'd be happy to have an assessment to be sure, from what I know though that's not easy to get unless the school has concerns? What's an EHCNA?

I think it's a combination of can't and won't, art/play therapy has been attempted, he doesn't like that either. The only person who can sometimes get through to him is the school nurse, she's due to see him again next week. He's happy when he's not at school, when we tried a reduced timetable back at the beginning he just got stuck and didn't move forward for a long time. I think if he had the choice now he would just go into school to sit in the send room for an hour and not take any steps to progress, he's firmly in the avoid frame of mind currently. Like you say zoo if I allow him to stay home I can see his world rapidly shrinking, he gains confidence and is happier when he's with his friends.

He understands the mechanics of anxiety, he's been to an anxiety group (wouldn't participate) had loads of explanations/techniques but again doesn't acknowledge any of them.

Transition wise yes school gave him his own personal tour, we had meetings before, his therapist tried to prepare him and the school nurse did some work with him too. He's been assessed by child wellbeing team over the summer, they discharged him as he's getting into school (albeit not getting into any classes)! he doesn't meet the threshold for CAMHS apparently and he told the therapist he doesn't want any help.

He goes into the office in the morning, a member of the send team meets him and takes him into their room, they've tried to encourage him to stand outside some of his classes with a send teacher to listen in and get used to the environment, they've taken him into meet teachers when no other children are around, showed him the classrooms etc. It sounds like he's had countless members of staff helping/supporting him, they've tried the sensory room (he doesn't like) tried to get him out to eat lunch with a friend (he refused).

Family wise, yes lots of support, very involved DH, older ds who is tolerant but doesn't really understand why he's anxious and as for me I'm on the waiting list for therapy as I've reached the point now where after over 2 years of this I'm beginning to break. Phew another epic post but I do feel slightly lighter already!

starry my D's was a lot like yours with school situation.he got stuck in same position then got steadily worse
Good to hear you have support.its hard enough without being alone with it
We are always here to offload.some dip in and out,some offload and never return and others hang out regular all of these is fine!

Thanks zoo I've been lurking for a while, I'm glad I finally posted.

Starry - that sounds really hard. My DD is out of school at the moment, and I'm worried that if we don't get her into something soon she is going to fail to start again (and she's Y11, so it's a biggy).

I feel really incompetent - I wish I had some words of wisdom for anyone else, but this is very new for us, so I will just have to offer a handhold for now.

Are anyone's teens taking medications? For either depression or anxiety or both. We are thinking about trying to get a private psychiatric appointment to find out what the options might be, although I'm worried about side effects.
Any advice on how to find a psychiatrist? I don't have a clue where to even start!!

Dd been in school since Tuesday. I hope it lasts. She is very nervous getting out of car but she does get in and is ok after. I do admire her strength. Need to tell her more!

Re those of you that's teens are really not getting any schooling. Would home school be an option. My friend home schools hers and there are so many resources out there now especially since covid. She mixes as there are many session on a site for homeschoolers

Also it's not as time intensive as no other kids wasting teachers time.

Just a thought.

Appreciate it's another worry in top of worry.

I gave dd vit b complex and half tab magnesium and vit d and a cbd low dose capsule every day for 4 weeks then dropped to every other day.

They have helped a little Obvs not a miracle cure but here moods are more even. Think anxiety same but her normal mood when not stressed are definitely more lifted. She spends more time with us too.

Don't know much about prescription meds GP best place to start. But worth trying the vits before the hard core stuff.

Funnily enough it was another mumsnetter than recommended the b vits. Then I did my own research.

Madness that is wonderful to hear.

I wouldn't deregister and homeschool unless you actively want to do it, getting support is easier when on a school's roll. Crudely you are someone's problem. It is all too easy for professionals to forget about you and sweep your family's needs under the carpet when you EHE. If you EHE the LA will say you are making suitable arrangements and they are relieved of their duties. If DC can't attend school the LA must provide suitable education.

Bubble DS1 (12) takes Mirtazapine and Risperidone (which is also used for PTSD). They haven't been the magic bullets that allows DS to engage with EMDR I hoped they would be, but they have improved our situation, especially the Risperidone.

You could find a child psychiatrist via somewhere like The Priory or psychiatry UK. Alternatively, look at somewhere like the Maudsley, who are excellent IMO, who offer private treatment too.

Starry an EHCNA is the needs assessment part prior to getting an EHCP, which is a legal document detailing a child's needs and what support they require. It enables you to get more support than would otherwise typically be available. Have a look at IPSEA and SOSSEN. Wales, Scotland or NI have their own versions and charities than can help - if you are in one of those let me know and I'll point you in the right direction.

What does DS like doing at home? What is it that the school nurse does/doesn't do that makes her acceptable but others not? I think understanding that is key. Will DS engage in 1:1 teaching whilst at school? That should help narrow the issue down to a problem with the work of the environment, and also DS should still be getting some teaching even if he can't attend lessons. Would DS stay in an empty classroom rather than the SEN room?

Thanks bubble and a reciprocal hand hold for you too, my older ds has just gone into year 12 so I understand some of the pressures year 11 entails too, that must be an added worry for you

That info is great leap thanks so much, you are obviously very knowledgeable, I'll have a look at those resources re the EHCNA. I have a meeting with school next week to start an early help assessment so I'll raise with them then.

Ds likes gaming, YouTube and he does hang out with us and his db quite a bit, we try and have plenty of family time with him and on the whole he seems happy when he's with us. I think it's mainly the other pupils that overwhelm him, he has said before he feels trapped in school and obviously he's gone from a small primary where he's been since nursery and all the teachers and pupils knew him well, to a huge setting with lots of children. He would and does respond (I think) to individual teachers and probably teaching alone in a classroom would work but I already get the impression the SEND team have a lot of pupils to support.

I think the school nurse knows him well as she was our only real support when all this first started. She sets him targets and little challenges and does lots of visual work with him re anxiety, it took a long time before he responded to her too though. We are very lucky that she covers the secondary school too.

I am so proud of him that he stayed in today, I do understand it's such a massive change and it will take time, I just want to see some tiny signs he is working with us all. Tomorrow is another day and this first week feels like it's gone on forever!

@1leapforward2back

Good point re support and school I'm not considering it for dd but I think if I knew 3 years ago what I know now I may well have seriously considered it.

I am counting a small win this morning! DD has got up without huge amounts of intervention from us. She had a headache when she woke up, so texted and asked for ibuprofen, had coffe and pomm bears in bed ( but it's calories, and helps her to get moving). When DH went to encourage her into the shower, she had already got in! Will still be 11am before we are out for a walk, but with a lot less input from us. Vitamins have been started - Floradix plus a VitD spray.

We need to begin to tackle the thorny subject of returning to school in some form - whether that's online provision or f2f. With her assent, we have created a pros and cons document for both, with a description of the likely daily routine and some questions for her to think about.

Yesterday's highlight was a parcel of sweets and notes from her school friends, which she was really appreciative of. They are incredibly lovely girls, and she is lucky to have them.

How is everyone doing this morning? Have many made it in to school?

@Bubbleswithsqueak my DD (10) was prescribed medication by a private child psychiatrist for PTSD and GAD. We used Psychiatry UK but there’s also Clinical Partners and others that @1leapforward2back suggested above. All consultations were via secure video call and I found it all very in depth and efficient. DD is on waiting list for CAMHS and we’d hope to transfer over her care when a space becomes available. Please feel free to PM if you’d like more info re the private route.