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

Bagpuss completely understand, just thought I would mention it as so many are misdiagnosed.

DS1 is clearly over tired. He is currently crying because DH looked at him .

Thanks @1jumpforward2back I really appreciate any comment or things to check out it really helps to think about it again in a different light.
It’s hard when you know they are tired out and any comment or look will set them off! Hope your DS got over his tears and felt better after. My DD had a good power nap earlier it sometimes helps a lot when sleep is patchy.

1jumpforward2back. Thanks for the advice. I don't think he would go back to school now even if he had the option. He never talks to us so they probably gave him the option to finish rather than told him to stay away.

You all seem so knowledgeable and are holding it together so well. I feel like I'm floundering all the time.
DH suggested going on holiday abroad. DS wouldn't come with us, and there is no way I could leave him alone for 10 days or so. I would be so anxious it would be the most horrible time.

Thanks Tis. I don't always feel it. Years ago I worked in a related field, but most comes from personal experience navigating the system with DC. We are more settled than in the past, but that's because, in comparison to others, we have a lot of support. Although it took a lot of fighting and hard work to get DS1&3 the provision they have.

I wouldn't leave DS alone either. If you did want to go away and riding won't go with you is there someone DS could stay with or could stay with him.

tis we all wing it most of the time.its ok to feel you are floundering,caring for mental health is unpredictable and never a simple straight line.there are curves and bumps and sometimes backwards a lot,then forwards a little

I wouldn't leave D's either

Sigh. Another A&E trip in the offing for stitches to self harm wounds.

DH and I went to friends house nearby (as in 5 mins walk), both checked in beforehand to ask if she felt safe. She assured us she was. Not alone, with sister and dog.

11pm she texts DH, has two cuts that need stitches. I patched her up and we explained that taking her to A&E at midnight on a Saturday means hours of waiting (you don't get medical help unless screamingly urgent until CAMHS arrive) and no sleep so that it's better to go to bed and take her in the morning.

She's trying, she really is but can't seem to signal a crisis before it happens.

I'm worn so thin. I went back to work last week and can't really take more time off. DH is as low as I've ever seen him.

Tee I'm sorry you are stuck in a vicious circle. DD really needs CAMHS to provide more care so she doesn't reach crisis so often.

Could DH take some time off? Not necessarily to care for DD, but to focus on his MH. Have you and DH had counselling? I've had counselling on and off over the years. I find having someone to offload to that is independent helps (a bit like this thread).

Thanks jump DH was off work from end October until 1 April as was between jobs. I am at my wits end with CAMHS as we are between two areas. Our nearest A&E (1 mile away with a paediatric A&E) falls into one mental health trust and our home address is in a different one. We put the support our 'home' CAMHS recommends in place privately for reasons of reliability and lack of visibility about waiting lists plus a three month period where DD had no assigned case worker due to staff changes. Our home CAmHS discharged us a month ago on the basis that they couldn't offer us anything else other than a place on an endless waiting list for family therapy. They grumble that we don't go to 'their' hospital- which is 4 miles away and can take 45 mins to get to in traffic though I can't see that making a difference.

However we are talking to children's services and have had communication with SEND re an EHCNA. It seems DD1's patchy school attendance is getting us more traction than her self harming.

If your DD needs stitches why are you waiting hours to take her into A and E?

@Rustnot there's a history here and at some level she feels validated by the perceived drama of A&E. But A&E isn't designed to provide anything other than crisis support, there are other people both family and professionals ready to provide support but she won't ask for it.

Waits are currently several hours overnight for medical attention and another few hours for CAMHS crisis assessments (we have several direct and recent experiences of this). I have been here since 8.30 this morning and had the wounds attended to by 11. We've been waiting since then to see CAMHS - ta daa it's Sunday so it's the duty psychiatrist not the community team.

Turns out she's brewing a cold and feels rubbish ie would be better off at home.

Each admission kicks off another round of eg medication reviews, follow ups, safeguarding review etc etc etc.

All of which wouldn't be needed it she felt able to signal her distress earlier.

Hope that makes sense?

tee I have no practical advice,but lots of sympathy and a listening ear.im so sorry another a+e trip occured.sending love

Rust that is a bit unfair. Tee explained physical healthcare beyond stabilisation isn't given to DD until after a CAMHS assessment, which is highly unlikely to be overnight on a weekend. Therefore, it is best for DD's MH if she tried to sleep overnight and went to A&E in the morning as going overnight isn't going to get the stitches any quicker. Waiting in A&E with a child in crisis can be horrendous, waiting with a sleep deprived child in crisis on a Saturday night is hell.

Although, when we have been CAMHS insist physical healthcare is provided first, but DD's history might explain the difference.

Tee lack of school attendance should be getting you noticed, but not instead of mental health care. If DD gets an EHCP MH therapies can be included in them, and therefore must be provided. I can see why CAMHS discharged, many don't allow mixing of care. Although, the care they provided was lacking and complaint worthy. Does the interaction with children's services include an assessment for DD by the disabled children's team? And signposting/referrals for carer assessments for you and DH.

Can your area's CAMHS write an action plan of what they want to happen when you attend A&E outside of their trust? For DS1 we have detailed plans for physical and mental health A&E attendances.

@1jumpforward2back sorry my post wasn't meant to come across so bluntly. I understand the A and E process for adults in crisis or who have self harmed, but I'm fortunate enough not to have experienced it with a child. My question was only because the sooner wounds are stitched, the better the outcome. Frequent flyers in adult A and E are sometimes given steri strips and glue so they can care for their wounds at home and I guess the idea that she had been patched up at home makes me wonder if some glue and steri strips would be enough to care for the wounds? Especially if the process of going into A and E is driving the cycle of behaviour.

Again, I don't know, but adults don't have to be seen by pysch when they go to A and E - is it mandatory for children to be assessed? It is madness that CAMHS have discharged under these circumstances.

NICE guidelines state if a child under 16 presents at A&E in crisis/having self harmed they should be assessed by CAMHS. If necessary they should be admitted to a paediatric ward until this can happen.

If a 16-17y/o presents they should be assessed by either CAMHS or the duty adult service. Again, if necessary, they should be admitted until this can be done.

Not assessing under 18s would be remiss of the service.

It is highly unlikely an under 18 would be given steri-strips to self treat self harm wounds. Such practice would be frowned upon.

I think the difference is children and young people are not just small adults and shouldn't be treated as such. There are also many more safeguarding concerns than there is with adults.

Thanks all as always. @Rustnot don't worry, if I'd read my post a year ago I might well have reacted similarly.

The last time I went in with her 6 weeks ago I was awake for 30 hours straight other than 2 lots of 45mins on non-suitable sleep surfaces. I know from experience that if they decide overnight to admit you from A&E they mostly won't take you to the ward until morning to minimise disturbance to patients already there.

As jump says, CAMHS assessment is mandatory. Yesterday we got medical attention before CAMHS saw us but only when I promised we wouldn't attempt to leave without it.

There are positives, grim though they are.
Yes, she self harmed again with a blade she'd concealed and lied about having.
But she told us straight away, which hasn't been the case in the past.

She's taking her y10 mocks(her choice) and stressed because this is the first time in over a year she's properly engaged in school work.

She wants to be in school.

We see more of the funny sensitive and lovely person she really is.

She's started saying to friends that she wants to get better.

@1jumpforward2back thanks for the pointers through the maze

And to you too Zoo

Tee- those are really significant positives hang on to them and I really hope you see an improvement soon, it must be heartbreaking and exhausting for you.

DD hasnt been in school since last Monday and the friends whatsapp group incident, shes been in her room all week feeling sick, I think sickness is linked to anxiety but she swears blind shes not worried, today I managed to get her out of her room to get lunch at subway-her favourite treat so that was a big step.
Still waiting to hear result of EHCNA, had a discussion with senco who has backtracked from our earlier conversation when she suggested mainstream may not be right for DD and now says she thinks they can manage her needs in school- trouble is I cant get DD there! She also told me that shes heard there are over 300 pupils on the waiting list for specialist school so not to hold out hope that. Not sure if she meant 300 on waiting list county wide or at out most local appropriate specialist school either way she seemed to think there wasnt a cat in hells chance of getting a specialist school for DD. Worryingly after saying they can manage DDs needs in school she went onto say she hasnt got an available LSA to run the emotional literacy support programs or ASC SEN toolkit she was talking about- so a bit of a contradiction! But first hurdle is getting DD into school,...

Runner that's why it's important to have a paper trail. Follow up telephone conversations with emails.

Yet again the SENCO is talking nonsense, and swallowing the LA's rubbish hook, line and sinker. Ignore. SS placements don't work like that. Others pupils aren't your concern, their parents can challenge the LA if their DC isn't placed in a suitable school.

Unless the school is wholly independent the LA can only refuse to name your preference if they can prove one of the following:
The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or

• The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
• The attendance of the child or young person would be incompatible with the efficient use of resources.

The bar is high. There's no legal definition of 'full', and being 'full' is not enough of a reason to refuse to name your preference, they have to prove they are so full it is incompatible. Look at independent and non-maintained special schools. There is every chance of getting a SS named, and if the LA name a school other than your preference you can appeal.

Thanks Runner. You're right and I've got better at meeting her where she is over the last 15 months. And at least she's talking to me now, which wasn't the case for large stretches of the last year.

DH has found it hard in that he has tended to view this as the worst thing that could happen when there is much, much worse. It's still heartbreaking though.

Zoo hope the meeting today wasn't a bad as feared.

Jump, thank you as always for your advice and sharing your knowledge, its invaluable-trying to figure out what option would be best for DD and how to achieve it is really difficult.

Zoo- I hope meeting was ok and you survived it.

As we didn't have the doctor's note it's been cancelled til we do
I'm confused as camhs as who team lead is for dd2(?)and sent links for iass and school refusal when I explained how bad she's struggling.i emailed are you saying has Sen need that requires EHCP and if so what exactly.no reply and that was week ago.why is it never easy

Had call lea yesterday.vwry dominant lead has informed me schools selected for D's and as he's been out education 3years inclusion team will be on my back if don't accept(2 years school gave no work but was signed off by camhs,this year diligently done online work to point of awards for attendance)all options I wanted can't meet need/are full so I'm out ideas.this one is a failing school on edge of county (assured will get transport as I don't drive) adding new Sen unit sept.intention is for inclusion in mainstream "where possible" .I do not have the strength to fight with them anymore,there's no argument I can offer regarding what will be like as it doesn't exist virtually or in real world for visit or for checking reviews etc currently and I'm drowning in needs of them all on my own at moment

Oh FFS...docs secretary rang.doctors don't do child sick notes.school need(in writing)specifics of what they want to know. Ive just about reached limit
Ds is a mess asking thousandsof questions I can't answer(how many kids in unit,what subjects,how big is it,will it be taxi or mini bus etc)along with endless draining this is going to be a disaster thoughts and anxieties
Dd2 freaking over today's camhs call and has been snapping at everyone since yesterday,tripping one panic attack after another
Lil zoo has HPV vaccine and asking every 5minutes what happens,which arm,what are side effects,what time am I having it,where do we go to have it etc

I have burst into tears 3x already today.i had my second covid vaccine Friday night and still don't feel quite right,have weird eye/headache thing that's been going on over a week,guts playing upand generally strung out so tightly I feel like I want to snap and collaose

Runner knowing what to do for the best is always difficult. Often there isn't an option that is 100% perfect, you can only choose the best option for you and DD.

Zoo DD does have SEN, SEMH is a type of SEN. DD would meet the legal threshold for an EHCNA of a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. GPs can do school evidence, but I would focus on getting it from CAMHS.

You can appeal the school named in DS's EHCP, the LA can't do anything to stop you appealing. Don't let them pressurise you in to not doing so if you want to. At the moment however, you can't deregister DS without asking the LA for permission as he is currently in a SS. A formality, won't be refused unless safeguarding concerns.

Unless the school is wholly independent the LA can only refuse to name your preference for one of the following reasons:
-The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or

• The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
• The attendance of the child or young person would be incompatible with the efficient use of resources.

The bar is high. Case law shows incompatibility is more than an adverse effect, impact on or prejudicial to. There's no legal definition of full. Being 'full' is not enough of a reason to refuse admission, the LA have to show they are so full it is incompatible. In what way do they say they can't they meet DS' needs, do you agree? The LA can, and must, name a school despite its objections if they can't prove one of the above reasons.

Is the ARPs primary need SEMH or ASD? Can you go and look at/speak to the mainstream the ARP is going to be attached to? If you wanted to challenge it you can, with even half the needs and provision that should be in the EHCP you would have a good chance at tribunal.

If they are opening September they must have already recruited staff and even if not finished the accommodation must be planned at least. They must also be working on a model of how they expect the ARP to work. They should know how many pupils, what subjects, the proportion of time expected to access mainstream etc. They won't know transport details yet, they are always last minute. Information may be available on line from the consultation when the LA decided which school to place the ARP at.

You could have challenged DS receiving inadequate provision over the last 2 years.

DS will get transport, nothing to do with you not driving, everything to do with DS's SEN. We choose to have mileage instead for DS3 because we take/pick up DS2 anyway.

From your posts I believe you would qualify for legal aid should you wish to appeal.

ARP?
I was just told the schools I wanted couldn't meet need(i suspect as D's is highly academic and I know some learners within one school and he is only on par with them in social skills,academically not even similar in need)
Information maybe online from the consultation where would I find that?

Also could they persue us for D's non attendance if we said no and kept looking for another fit? I get very flustered as she(Last from LEA) is extremely dominant and she knows it as always chooses to converse on phone rather than via email