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 for the tip about Young Minds. I am looking at the site now.

Can I say my story, in the hope of advice please?

I am a (now) single parent to two children both DX ASD.
The eldest is Y11 and also DX Anxiety and has dyslexia /SpLD etc
We have had to move schools because there was no support at primary in our old area in Scotland. He has been bullied throughout.

He is now at a very rough Academy where they describe him as 'vulnerable' but he has no EHCp (rejected 18m ago). He has only 1 'friend' who Camhs describe as 'Toxic'. Home ed has always been at the back of my mind but last resort as I feel he needs to be out in the world and we are very isolated (rural) so school IS his only outlet to the outside world. He is determined to keep going so I want to support but it is making him ill - he's been having such bad 'severe benign motor movements' that 2 Consultants thought it was epilepsy until tests proved otherwise.
During lockdown learning he panicked and wasn't able to engage at all. School have said: 'don't worry, get him back in, forget exams'
He too says 'I can either do MH or exams not both'. BUT he is also incredibly worried about passing something next summer as he is terrified of the future with no exams.
I have very very limited options:
I could send him back to his current setting (his choice) but I know we will hit the wall again soon. Or I could move him to Scotland (old area, less good re ASD in general) and he' likely not have to face exams this summer as they are going to go with predicted grades there. He's halfway through the course time there, but he's also not got a prayer here as he feels he can either 'try hard' and not have the seizures or relax and he will be able to cope better. But then he (literally) bangs his head off the wall re getting no exams.

I don't know how best to help him.

Sara I have no experience of levels self harm you are experiencing
52welcome lovely

52 that sound incredibly hard.has he got any proffesional support going on at the moment.could you re try for EHCP
Sara sometimes even they don't know why just frustration and the release of it

@Stilllivinginazoo

yes, it is hard.
He is still 'under Cahms' - he has a new prescription for melatonin and some telephone 'anxiety support' every month.
He took an overdose of his promethazine (prescribed for sleep issues, ironically he wont' take it normally) 3 weeks ago. I was terrified but his Psych (who is v good) and the epilepsy guy both seemed quite relaxed about it? (obvs I didnt want them to panic too but still)
Sorry @Sara2000, I feel like I am parachuting in on your space here.x
My ds also self harms a bit (minor cuts to upper arms, scratching initials in). He says it helps to 'feel the hurt' on the outside :(

Sara
I have just remembered another online resource. When my daughter was an in-patient under CAMHS they gave me a copy of a self-harm fact sheet which is produced by "Rethink Mental Illness" and available on their website.

Thank you. I will take a look. I do regular history searches on her laptop and found a chat thread with some other people on Discord about self harming. Part of me thinks that's encouraging her and wants to remove it. But that will cause issues in itself as her gaming friends are her 'real friends' as far as shes concerned. We have had a nice day today which has helped. I am giving her more routine, daily chores and exercise and a strict cut off of 10pm for her tech. We are also buying her new bed as she cant sleep which wont be helping and her current bed is old. We just have to see this through until she stops. I hate this invisible enemy.

Sararoutines are always helpful in my house.we stop tech fairly early for 12 and 14 ye old.16yr old dd2 has blue light glasses and is off tech before 10.she has exercise outsideand selection activities that help soothe her as she's quite sensory
She likes mohdoh,scratchart,has mixture stress toys like tangled/fidget cubes/other things likes to touch like conkers/acorns,adult colouring books,suduko...we try and keep structure,esp waking up and go bed time or she really has problems with sleep patterns.no matter what time goes sleep has be up before 8 even on weekends

Hello new posters and old friends,
Sorry I haven't caught up completely with recent events, but it sounds like so many of our DCs - and us - are really struggling.
DS2 started school last week (in class) and is so far settling in. Major stress with DS1 and online learning starting tomorrow. Defeatist attitude (his classic anxious behaviour) already creeped up and we just finished long talk at midnight that he's not ready to/won't do it. Has new Special Ed. co-ordinator this year who we don't know and we've already sent our first (of hopefully not of many) email to him about his anxiety.
I gather from others' experiences it has also been a very challenging time.
Zoo very sorry your weekend was filled with so much stress and anxiety. Do you have any self-care planned today?
1skip it's been so difficult for you as well - hopefully getting better as we approach the end of the month. How did the dentist go?

Welcome 52andblue. Did you appeal the EHCP? Many LAs refuse in the hope you don't appeal, but the majority of tribunals are upheld, so reapply. Having an EHCP may help DS relax knowing he can access education until 25 if necessary. Separately to this, if DS is too unwell for school the LA have a duty to provide education.

Don't EHE, even if DS can't attend, it is far easier to get support when on a school's roll because you are someone's 'problem'. When you EHE the LA are relieved of their duties to provide support. IMO a move now could cause further anxiety, especially if he wants to stay.

Although not as severe as you DS, DS1 had an EEG a while ago to confirm some movements were anxiety like we thought rather than epilepsy.

I second Roseau's recommendation of Young Minds' parent line and getting support for yourself, Sara. I hope a new bed improves DD's sleep, everything is harder to cope with when tired. If DD wants to talk let her know you will listen, but don't force the issue. DS1 finds it hard to verbalise why, sometimes he doesn't even know. We get more out of him in indirect conversations. Questions and direct conversations make him feel interrogated.

Zoo so frustrating you are still waiting. It would have made sense to discuss DS with the HCP who carried out the ADOS prior to the appointment. Even if the primary need remains SEMH there is no reason it has to be the LA's choice of SEMH school. I hope the change in rules at sixth form are helping DD2.

Viking I hope tomorrow isn't too traumatic for everyone and you have a swift reply to your email. How are you?

Busy and stressful few days. Sadly FIL died unexpectedly. DS1 needs 2 baby teeth extracting because they are pushing the erupting adult teeth out of line. When discussing it DS had a meltdown that worried the dentist to the extent they phoned in the evening to check DS was OK. It looks like DS1 has developed another allergy, but I haven't worked out what to yet. Luckily only localised reactions. On Friday we had two disappointing appointments. To top it off I'm in the middle of sorting DS1&3's AR paperwork and DS1's DLA renewal has arrived.

Viking lovely to hear from you.hope email reply is swift
Skip sorry to hear about fil.sounds like very stressful at yours right now.hope you can work out cause of allergy.how often is dla renewed?

Depending on the award DLA is renewed anywhere from every 2 years to an award until 16th birthday. DS2's was renewed earlier this year for 3 years and DS3's last renewal was for 5 years.

Can I have a handhold please? My DD (14) has been self harming since the beginning of the year, cutting but also heating objects and burning herself with them. We are in A&E as she has swallowed a battery. X-ray and waiting to see what's next.

She's seeing CAMHS and also a private child psychologist. School are engaged and helping with root causes.

My beautiful daughter is covered in scars and it seems no-one can reach her to help her stop. I'm terrified for her.

Here is my hand for you @teelizzy.

We are going through a similar situation with 15 year old Dd. Just been seen by CAMHS again. No words of wisdom other than to say I understand.

@teelizzy how are things today

Still on the paediatric ward, waiting for it to pass. Texting her therapist and working out if I need to take another leave of absence from work this week. It's the third this year. A day sorting out care for my 11 year old DD2 as DH had gone abroad to see his 84 year old mother who has some significant health issues. I had to leave her home alone for part of of the night while I was with DD1.

Who texted her friend at 2am saying she was in hospital leading to drama in 2 other households and her friends mother ringing me and the hospital in the middle of the night.

Cancelling stuff DD2 and I were supposed to be doing today.

Bracing for tomorrow's discussion with school and trying to work out if we should consider taking her out.

DH has flown back and will take over. We can't both be on the ward at the same time because of Covid infection control.

She's been working up to this, saying that she had had intrusive thoughts over the preceding two weeks which she wanted to talk to her CAHMS therapist about on Wednesday. Who didn't call as promised because she was dealing with another child in crisis.

But all this drama because she can't bring herself to tell us about these thoughts before she harms herself.

teelizzy what a nightmare.good to hear dh is tag teaming with you.its horrible for siblings isn't it?
I started the thread over ds but his older sisters a much more forceful character and after she crash n burn in run up to this year's GCSE fiasco it feels like we all tread on eggshells/cop her outbursts and I've no answers for that
I do hope you can get to the bottom of her triggers

@teelizzy. I hope your dd had a good night. It may not be a priority right now but someone on MN directed me to a website called Not fine in school which has lots of information about what to do if your child is too unwell for school.

Teelizzy, welcome. I hope today is less of a juggling act for you and more support for DD is forthcoming. CAMHS should investigate, certainly bring it to their attention.

Don't deregister, even if DD isn't able to attend, it is much easier to get support when on a school's roll, because you are someone's 'problem'. By EHE you relieve the LA of their duties to provide support because you are making appropriate arrangements.

If DD isn't well enough to attend school the LA have a statutory duty to provide education. The form it takes varies depending on your LA and DC's needs. It may be home tutoring, hospital school, online or in a small group. See this document.

As well as this consider applying for an EHCNA. The legal threshold is has or may have SEN and may need SEN provision to be made via an EHCP. Your DD meets that test. IPSEA are a brilliant charity and have a model letter you can use here. They also have an advice line, as do SOSSEN.

Also, with you mentioning taking a leave of absence from work, have you applied for DLA for DD? The same goes for you, Sara.

Thanks all. Got some sleep and walked DD2 as close to school as she would let me. DH is with DD1 who's still admitted waiting for er, movement.

Thanks for the link to NFIS, it's food for thought.

Thanks again all for support and the links on education. She's still in for observation as she hasn't yet passed the AA battery she swallowed on Saturday night and my DH has now spent 2 nights on the ward with her. I stayed off work yesterday and spent about an hour talking to DD1'a child psychologist. DD2 coping ok so far. Visited hospital yesterday, DD1 actually not in bad form but very hard to understand where her heads at. I find this latest bit of self harming really alarming. School, hospital, us all of the view that CAHMS need to step up.

Working today but concentration is shot.

DS has been given a tentative ASD diagnosis.tentative as he's so highly anxious it's been tricky seperating asd from anxiety,she says he every comes down out rafters with that and behaviours drop they could remove the diagnosis

Dd2 has had reaction to her propranolol lifeline (whilst camhs twiddle thumbs and we still waiting urgent medic app 7weeks later)chest pain,wheezing and blue fingernails mean no more of those and now she's having try manage without.lets just sat it's Not Going Well

Sorry to hear about Dd2 @stillivinginazoo. I hope the ASD diagnosis helps your DS.

Do any of you have children who display physical symptoms? Dd went back to school today which was a bit of a win. But she has broken down crying tonight saying she doesnt want to be here and she cant take the pain anymore. She says her head, neck and back constantly hurt. I am assuming some of this stress ,but also wondering if we need to get her checked out by the GP.

Sara when I'm depressed my body physically hurts,it's kind of an all over ache and sometimes even breathing feels like it's an effort