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

@Stilllivinginazoo I've started a diary looking for DD triggers. What springs out is talking about mental health as it reminds her of her suicidal thoughts, getting things wrong and lack of sleep. Have you noticed anything yet?
Sorry your DS is struggling with his online teacher. Is the teacher likely to be different soon?

Hi @Sunshine1922 and @MonaChopsis

DDis making good progress at school. She went in everyday. Came home period 2 on Monday as she'd only slept one hour Sunday night. I don't know how to help her sleep on a Sunday. She takes 2 melatonin but she is obviously so worried/anxious that she can't sleep. However the rest of the week she did 4 periods and 5 on friday.

five aw,sounds like she's making some great progress
Everything seems set dd2 off,but I suspect health anxiety/feeling odd or different under pins a lot of it and once starts feel it she can't stop focussing on it either.she also is in constant pain,which given latest one is a banged hand on the door which took off a little skin(tiny bit,about size small cat scratch) I am wondering if she's extra sensitive to pain too?

With regard D's nope.as a relatively small school(max 60 learners,only currently have 30-40 onsite daily) it has limited staff too.before shielding/lockdowns he had another 2teachers doing one lesson each a week.i think having had access the full range with all their different styles of teaching,and all seem to enjoy his level of engagement and working with him he's found the monotony of one teacher whose teaching style he hates is really upsetting him.his "tutor" has managed secure 20 minutes on Monday and Tuesday to read with him which they did in lockdown so I'm hoping that breaks things up a bit

Good news for me / DD after spending the weekend reading through past threads... Particular thanks to @1jumpforward2back for the advice to me above and to others in the past!

DD attends a very small remote school (35 pupils total) and while they have been very supportive of her they haven't organised any external / professional help. So some of the support that has been previously mentioned by others in a 'unfortunately this didn't help' way hadn't even been offered to DD. So rang the locals education department, ended up speaking to a lovely woman who acts as a district support officer, and she has put DD top of her list for urgent 1:1 support and will be visiting her in school for an initial assessment either tomorrow or Wednesday!! Can't believe how quick that is, I get the impression that I was lucky because all the old face-to-face sessions were cancelled because of lockdown and they are just starting up with primary students again... Because a lot of her work is with secondary students she has temporary capacity.

In another win, she also works at the high school DD will attend (no other options locally!!) DD is part of an extension group of yr 6 students that attend high school once a week, and the counsellor can work with her there too to ensure a smooth transition.

So because of the information I got from this/past threads this weekend, I feel so much more hopeful and supported than I did at the end of last week, when I really didn't know where to go next!!

Jump I can see that DD has some ASD traits (selective mute when younger, sensory issues with clothing, anxiety etc) but I'm pretty sure that it's just traits... She generally interacts with others in an age appropriate way socially, she has a good circle of friends, and until recent panic attacks she has had no meltdowns... Not even toddler temper tantrums! She is very even tempered usually. Unfortunately she was exposed to a lot of verbal abuse by my ex before I was able to leave him, and I think it's left her very sensitive to any anger/raised voices, so any 'telling off' by the teacher taps into that fear.

I'm really hopeful that some 1:1 behaviour therapy will give her some really effective tools to use to help her cope when her panic starts cycling higher.

Mona that's brilliant news lovely.im so pleased for you both!

Thanks Stilllivinginazoo ... I just about cried with relief when I was on the phone to her!

I am beyond impressed with the tenacity and endurance shown by you and others on the thread who are supporting their child(ren) with long standing and/or severe anxiety issues. I've just about been on my knees over the last 12 months, full respect to all of you for every single morning you manage to get out of bed.

Moana brilliant news. Do you have any support for you?

Be aware LAs will tell you what they want you to know, it may not be accurate or the whole truth.

If the assessments and 1:1 aren't part of an EHCNA (or statement of SEN in Wales/NI), which I imagine they aren't given the haste, you should still apply for one. Otherwise support is not legally guaranteed and can be withdrawn at any time.

Support other than 1:1 and counselling can be accessed via an EHCP/statement, and the assessments may highlight needs and strengths/weaknesses you may not be aware of. Especially relevant to DD are sensory OT, SALT with SM expertise and further therapeutic support.

Some of Beacon House's trauma resources are excellent. Also have a look at the Coventry Grid. DS1 has attachment problems related to trauma which has some similarities to ASD (although also has significant differences too).

Five I hope DD continues to progress this week. If you need something extra just on Sundays what about a sedating antihistamine? Piriton if it is enough or promethazine for something stronger. Won't be prescribed long term but once a week may be or OTC (although you may have to lie).

Zoo I know DS has ASD and DD3 is waiting for an assessment but do you have concerns about DD2? Pain hyper & hyposensitivity can be part of that.

Thankyou for the welcome. I've typed a post and then deleted it a few times now. Today is a month since 12 year old dc2 tried to commit suicide. He keeps saying he is fine but I'm really scared he is going to do it again. Last time he just decided on the spur of the moment so there were no warning signs at all. I feel like I have to protect him from anything that might upset him.

Ellie is there any support in place now from any outside agencies?have you any real life support systems for yourself(friends,partner etc?)

Mona i think we do it because we know there's no choice a lot of the time!you take the small wins and hold them tight on the crappier days to keep you going.no one does better than another,we just get up blindly sometimes and grope forwards!!

Jump always.she played solitary in sandpit at nursery attachment of school.our "problem" is she adapts over time.example- birthdays.until was 7 others birthdays she was a nightmare of centre of attention ,wanting the new things for herself.then she adapted.humour has taken a very long time and sometimes you can still see cogs whirring to "get it" until year 7 only very obvious slapstick was noted as funny.ahes now got in down 99%of the time,although it's a little slower if subtle/new.i clearly remember an incident at a sleep over she wasn't invited to where they rang her and were making fun of her,but it was only one kind girl telling her they're laughing at you,not with you hang up that caused her to feel things weren't right.all her friendships have tended to be with children who see things black and white as she knows where she stands.tje one she didn't came back and bit her hard on the bum and now she trusts none of peer group motives and is sad and quite isolated.her "friends" are online fandoms girls whom at least half have diagnosed ASD..she's obsessive with certain TV shows,remembering some lines,and in many instances can recall the season,episode and title by a synopsis
She has always bin very dominant member of the house and whilst I live her dearly,she's the hardest work a lot of the time!last night she had tummyache/anxiety we spent 2hours listing alphabetically things associated certain TV show,with intention after a second go I will turn into a selection of wordsearches for when she's this string out
She knows what to say when asked questions about herself,depending on the circs so she always blends in

Ellie walking on egg shells is nerve racking isn't it? The worry you have missed something or are going to say/do something to trigger a meltdown, shut down or self harm, trying to pre-empt what others are going to do and say. Difficult to do, but you have to accept you can not control everything for DS. Counselling helped me.

Zoo have you asked for DD2 to be assessed? If you asked CAMHS about melatonin or bought it would she give that a go to help with sleep? What is CAMHS' plan for once you have completed a diary? You and DD can't carry on like you are.

After a CAMHS MDT we've decided we are going to swap DS1 back to Risperidone from Olanzapine.

Thankyou. We had camhs involved in the beginning but they discharged him because he got upset when they tried to talk to him so they said them being involved would make him worse. Ds doesn't want anyone knowing about his suicide attempt which makes it very difficult for me to get support. So we just told his grandparents and the school. So I have some support but not much. School have been really mind but they can't help ds if he says he is fine.

Ellie that's very hard on you though...I've no fantastic words of wisdom,just lots of sympathy and as much support/safe space to let it out here
Jump camhs are the bane of my very existence tbh.ds was promised by OT once he was diagnosed "there's a support team".yeah right.it was here's diagnosis.crack on
Dd2 "appears" ok so there's no way they'd assess her as I'm an over anxious,exaggerating mother..I do fear she's about to be offloaded.my only "hope" is as a registered parent carer I'm told that I'm entitled to find out what's going on/have my two penneth/advocate?(is this true?)
Lil zoo has ED team Thursday

Meanwhile I've been struggling aching /stiff skeleton and burning feet.doc call yesterday and results today show nothing sinister,except acute anemeia so current diagnosis is suspected arthritic flare up.follow up ap is 9th april.i can move,am hypermobile in fact,but it's really stuff and my hands hurts even washing them and are developing hard lumps/blister looking but not.not fun😔

Ellie there is always someone here who will listen. Happy for you to PM too if you would rather not post publicly. Have you thought about counselling for you or Young Minds parents line.

zoo fingers crossed for Thursday. Your hands don't sound good, I hope the settle soon. The support for DS should be in his EHCP, and therefore legally enforceable even if the LA have to commission independent provision.

Being registered as DD2's carer on NHS systems means you can speak on her behalf e.g. to the GP. It's not so much relevant to CAMHS as either way you can make your views known to them, but you can't force them to provide anything (except a MHA assessment as nearest relative, but that's not relevant) and DD2 is entitled to the same confidentiality.

Mona and Five wonderful news - sounds like good progress all around!
Sunshine sorry to hear how difficult it has been. School refusal is something I am all too familiar with both my DCs. They both have ASD.
Ellie my DS2 is also 12 - very difficult when they are not ready to engage. Like Zoo said, not being in control as a parent isn't easy, but pushing it often makes it worse.
Zoo - I'm sorry to hear about your crappy Mother's Day, lovely . I know I've asked before so I apologize - are you taking iron supplements for anemia? I hope your flareup has calmed down. You have so much on your plate with 3 DCS needing support.
Jump I hope things are better for you this week as well. You mentioned something I hadn't heard of before: WFH. I don't think it is a term used here. Is it essentially BMI? DS1 continues to have low BMI but doctor doesn't suspect disordered eating. I agree half the issue is his trampoline to self regulate...it burns a fair amount of calories and he will use it a few times per day. The other factor is moderate pickiness and when his sleep-wake cycle goes awry.

Close to wits end at the moment: DS2 severe anxiety about death. Have ordered a couple of books suggested by social worker on Amazon. He was crying and couldn't sleep last night so we introduced the melatonin. He's been on a half day school schedule due to school refusal and lasted 30 minutes this morning before school called to say he wanted to come home. He told his teachers he thinks he needs medication . We've tried familiar strategies like mindfulness, etc. but have not been effective. He is open to therapy but I do not know how long we will wait. I will likely email doctor's office today.
Am convinced doctor's office believes I am a neurotic piece of work at this stage. Emailed last week about DS1 and yes, perhaps six times in the last year for DS1 . Thankfully I have different doctor than the DCs or it would be more often than that .

Thank you also post marking.

hi all can i join? 16 year old son has anxiety and depression. seeing psychologist, under mental health team. on ADs. made it back into school and started mocks fine then had big panic attack and hasnt been back in. feels awful because the school say they need the results to base gcse grades on. im worried he wont get back in after easter because i know he really wants to go on to 6th form.( though im not sure how hed cope ). feel so helpless

Hi lu9months, sorry you are having such a crap time, I also have a DD struggling with anxiety, possible asc ( waiting for assessment) and school refusing.
I wish I could offer words of wisdom or better still a magic wand but sadly I cant, just lots of sympathy and completely understand your concerns.
No advice other than to hang in there, try not to blame yourself and support your son as best you can. Are school supportive? Its best to try and keep talking to them. My DD is in year 9 and I really worry that unless things improve she won't be in school for her GCSE years and what impact that will have on her long-term future, I am sure you have similar concerns. how long as you DS been suffering from anxiety?
Its a constant worry and im sure the strain of looking after an anxious School refusing child, most likely with other conditions like ASC, takes a toll on our health too.
DD first started to school refuse 18 months ago, lockdown took pressure off but possibly wasnt helpful long term although it felt like a blessed relief at the time. She is currently on a reduced timetable 3 hours/ 4 days a week but still isn't coping, we had a really good couple of weeks but then all went back down hill last week and this week.
School, who have been supportive, are now upping pressure on her to complete work and she finds it hard to concentrate when shes anxious and as shes missed so much school ( online learning was a disaster) its hard for her to get back into it and know where to start, so shes behind and overwhelmed which adds to her anxiety. i think school have lost patience and quite probably think i am pandering to her.
She is on( privately prescribed) Sertraline 125 mg, which has generally improved her mood and she is less anxious than she was but her anxiety still overwhelms her a lot of the time.
After a long wait we had initial assessment for cahms, and they told is she isnt ready for cbt, and she couldn't see a cahms child pyschistrist to take over prescribing medication from private child pyschistrist ( even though private child pyschistrist also works for cahms) and they haven't offered any help at all atm.
Currently considering private therapy/ CBT but it all costs so much but there is practically no support available on nhs ( and none at all for DD atm)
So without professional advice Im not sure how to break out of the cycle of school refusal, After a lot of coaxing I convinced her to go in one day last week, saying that if it got too much I would collect her, 2 hours into school she text me asking me to pick her up, I couldn't get hold of senco or pastoral manager so I took time off work to get her. On my way to collect her pastoral manager phoned to say they would like her to learn to push through her anxiety and asked me not to collect her, as I was already on my way and had told her I would get her I said I would get her this time, when she got into car she curled up in foetal position and wouldn't talk .If she feels she cant come home if things get bad then my chances of getting her there in the morning are virtually zero, and its awful seeing her like this and I felt I did the right thing. But on the other hand is she playing me and am I being too soft? Should I be tougher? As suggested by many people! Hard to know what to do for the best and im feeling completely exhausted juggling everything. This thread is my main ( only!) source of advice from people who really get it.
Sorry that was a long rant!

@Runnerduck34 that sounds so hard.

I know it's horribly expensive but if you can afford therapy/CBT then I would go for it. Coping skills will be important for the rest of her life.

I agree that you should have collected her. She's not 5 years old where you can shuffle them (generally) into school.

Not sure if school would agree, but could you focus on specific subjects? So forget about the majority but try to get her to attend for maths and English.

That can be broken down into more manageable chunks, rather than trying to catch up with everything.

I have younger kids, so may not be relevant, but have you looked at tassomai?

We've just started using it with my 8 year old but it's very short questions, easy to flick through and relatively low stress.

Could be a good benchmark for where she currently is and where she needs to work on?

Welcome lu9months. What are school doing to help? Have you considered applying for an EHCP? The LA have a statutory duty to provide education e.g. online or home tutoring if DS is unable to attend school. However, once DS is no longer compulsory school age that duty ceases and the only way to guarantee support is via an EHCP.

Same goes for you Runner. If DD can not attend school full time the LA have a duty to provide education. Have you complained to CAMHS? Did you apply for an EHCNA? EHCPs can include therapeutic support, including CBT, and if CAMHS can't or won't provide it the LA have to commission independent provision.

I think picking DD up was the correct thing to do. The advice we have received and what we have seen in practice is that you can and should push so far but then you need to stop as pushing further is detrimental. If you don't push at all you end up in a vicious circle as avoidance breeds further anxiety - as you have found DC worry about missing things, catching up etc on top of all the original anxieties. DC's world shrinks and they become even more isolated. However, pushing too far leads to crisis and shutdown which is what curling in to the foetal position is. Pushing beyond that causes more harm than good. What are school doing to help DD cope in school?

Viking sorry DS2 is finding school and life in general so difficult. Can he communicate what it is about school that he finds overwhelming? Don't worry about being seen as neurotic, sometimes you have to be that parent. To reassure you I have spoken to the GP much more than you this year.

% Weight for height is generally preferred by NHS eating disorder services, and is also used by CAMHS sometimes. It is current weight divided by 50th centile weight for a child the same height x100. Whereas, GPS and paeds generally prefer to use BMI centiles. Why the can't use the same measure I don't know!

hi all thanks so much, it does help to feel im not alone. the school have been supportive but won't let him do exams at home. they have offered for him to go in next week quietly to do them, or after half term. he doesn't feel he can do any of this. im worried he is about to drop out altogether . he is smart and predicted good grades, and until this happened wanted to do A levels, university etc but now is saying he wants to do an apprenticeship with no exams. its a possibility but everything has some testing in it, and I feel if his anxiety convinces him he can't do school/exams, it might restrict him in everything

Hello everyone I’ve been here before but got lost. I hope everyone is ok and surviving these strange times x

Sorry for my absence,lots going on and drowning a bit!
Viking hope thebooks help
Bigbus you ok lovely,it's been a while
Runner100% agree collecting if you promised,don't damage that trust when they're anxious
Luso hard,my DD has crashed and burned post GCSE debacle last year.hasnt attended school since October and has such bad anxiety.review today with camhs having filled out a week in her life covering everything you could think of

Thank you all for your replies, CAMHS just dont seem to be offering anything atm , DDs early help worker said CAMHS will only offer 6 weeks of CBT, although CAMHS haven't confirmed that if true it really doesn't seem enough, but they wont offer it until feel DD is fully ready to participate.
Can't see how she will ever get better without professional help and tbh as parents we need help and guidance too.
Good news is DD is finally opening up and talking to early help worker which is fantastic however she isnt a psychologist or therapist so there is a limit to her expertise.
Now have an arrangement with school that DD will use mood cards in school to communicate how she is feeling with staff, if she feels stressed and needs to come home they will give her 30 mins to calm down and see if it passes then they will contact me.
Last time ,she was anxious for 2 hours before she text me but staff were unaware so thought she hadnt tried to break through the anxious feelings so I am hoping the mood cards will help her communicate.
Have applied for ECHP, have passed 6 week initial assessment so onto second stage which i think is about 16 weeks and then they decide whether to issue an ECHP or not.
Not sure what support to ask for so any pointers would be gratefully received, I will ask for therapy/CBT.
I now have 2 weeks off work for easter holidays, so hopefully no work and no school should ease the pressure off both of us.
Hope everyone has a relaxing easter break

Ps hope you are ok zoo 💐

Runner I hope the 2 weeks break gives you time to rest and re group.

As you say if the LA aren't going to issue they must inform you by week 16. However, if they are going to issue in order to stick to the timescales they must issue a draft by week 14.

As part of the needs assessment the LA must seek advice from the following:
"a) the child's parents or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child's parent or young person reasonably requests that the local authority seek advice from."
SEN regs 6(1)

Note h - SALT, OT (including sensory assessment) and psychiatrist &/or CP are reasonable. Be sure to ask in writing. If the LA refuse IPSEA have a model letter you can use to complain.

"Not known to the service" is not an acceptable response from social care. As you have ongoing EH involvement it shouldn't happen anyway, but you never know with LAs.

Those approached for advice must reply within 6 weeks. If assessments can't be completed within the time scales the LA must commission independent assessments.

It is vital the reports are detailed, specific and quantified as the provision will be taken from them. If they aren't ask the LA to go back to the report writers to make them so, IPSEA have a model letter for this too. If the reports are vague and woolly the EHCP will be too, and then it isn't worth the paper it's written on.

If the LA do issue you have 15 days to respond. If you think DD may need a change of placement it's a good idea to be thinking about it.

Sometimes you have to be that parent. It may be standard to CAMHS to try to get away with only 6 sessions, but those whose parents complain and push will likely be offered more. Also, if CBT is in an EHCP it should be in section F as an educational need, therefore if CAMHS won't provide it the LA must privately fund it. If DD isn't able to access CBT ask what they are going to do to help her become ready. What are DD's interests? Would something like music therapy, art therapy, animal therapy... be more likely to engage DD?