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

Hi all, sorry looking for advice again. We managed to get DS to the park today, first time out in a month (ish)
He was really anxious but managed to play for a while with his best friend. Then he had a panic attack and heaved 3 times (he's so scared of being sick). Do any of your DC's heave or feel sick when they have panic attacks?
He says he never wants to go out again. I'll be on the phone to CAMHS first thing, and the doctors because he is getting more and more picky with food. We are looking at private child psychologist too.

@alwaysscared DD2 feels sick but hasn't actually vomited during a panic attack. Her throat feels constricted, racing heart, shaky, jelly legs and she has fainted on a few occasions.

DS did well to go to the park - I'm sorry it ended on a low note for him.

Thank you @MuddlingThroughWithoutAClue I love the username, that's how I feel at the moment!

leap - thanks so much for flagging that issue with EHCP application - I shall make sure that we do not leave home for more than 4 weeks!
Fferny - I am getting more used to waking up and smelling food cooking at weird hours of the night, but it still makes me uneasy that DD is 'alone' in the house. But sleep is sleep, so hey ho.
always - sorry DS had a rough time at the park. Hope you can get some support through CAMHS.
Best of luck to everyone struggling with school in the morning. I will be having my own anxiety issues as I have to work away for the first time since DD got properly ill. DH will be with her, and she seems fine with it, but I will be a jibbering wreck, I think!

scared dd2 has tight throat and anxiety surges make her feel like going to be sick when panics.alao fearful of vomiting.i find slowly calmly talking to her to breathe,that's she's going to be fine,its "just" anxiety helps(she is older though)I show no sense of worry for her nor do I ask questions/engage in her anxiety.this has developed over time/experience

@Stilllivinginazoo thanks, that's what we try to do, but he won't do slow breathing, he just doesn't want to engage when he is like that

scaredthat's very hard lovely

Hi all, still here and checking in. Ds is making progress, I tried to help another parent whose dc was struggling this morning. I've noticed more and more with similar issues.

Hope everyone is doing as well as they can and wherever dc are on their path...

bubbles understand your anxiety, I had to go away for 3 days when ds was at the very beginning of his anxiety issues. He actually coped well, the lead up to it was worse then the actual being away

Hi all
I spoke to a solicitor tonight about DD tribunal. The LA are late in their response to the appeal request and I am not confident we will get far. She has said she will go through all of our current evidence for us and identify what's needed. Feel better a about it all now.

Always - me too!
Starry - glad to hear you DS is making progress.
Zoo - have you made any decisions about whether to give up your room or not yet? It's quite a big ask and I think I'd be resistant too.

DD2 hasn't made any significant progress really in recent weeks however a few things are happening support-wise. She now has a CAMHS care coordinator/therapist who will see her weekly. Last December we were told that it would be CBT but care coordinator said after meeting DD2 for introductory appointment that she wouldn't cope with it at the moment as it would be too intensive for her so she will work with her in different ways for now. Some sessions will just be with me and DH helping us learn how to support DD2 - this is welcome news.

As part of the EHCNA we were referred to the Early Help team and a TAF has been arranged for a couple of weeks time - I'm also pleased about this and everyone has confirmed their availability.

DD2 has a mental health youth worker from a local scheme too who's will meet with her and in theory offer practical help (if she can get DD2 to leave the garden for a walk at some point I will be over the moon but just having social contact with someone other than us would be positive).

The deadline for evidence to be submitted for the EHCNA was last week. The LA steadfastly refused to seek meaningful advice from SaLT, Sensory OT and a psychologist despite my many emails quoting the law. The last email I had was to tell me that they were seeking legal advice regarding the concerns I had raised. All these emails were clearly delaying tactics. I also used IPSEA's model letter to complain to the Director of Childrens' Services and was told that this was being dealt with through the correct channels also. I don't think there's anything else I can do at this stage but I've kept copies of all the emails ready for mediation/appeal.

Annoyingly I discovered too late for the EHCNA deadline that you can self-refer to SaLT and DD2 now has an assessment for half-term week. Kicking myself for not realising this and taking action sooner but I thought CAMHS would arrange one and then I thought it would happen during the needs assessment. Care coordinator has done an OT referral too although I have no idea what the waiting list is like.

Does anyone know if I can as for get late evidence to be included in the EHCNA or will I be able to ask for it to be included at appeal (assuming they refuse to issue)?

DD2 continues to spend most of her time in her room, rarely eating with us and only leaving the house for necessary things like appointments. She sometimes says she wants to do more and I know she hates feeling like she does but every interaction over the week (a few online lessons) seems to exhaust her mentally and emotionally in a cumulative way to the point where she becomes so anxious and low that she stops being able to do anything.

Muddling brilliant news regarding the increased CAMHS input. DS1's care co-ordinator is brilliant.

Evidence collated after the EHCNA won't be included in the draft EHCP as provision in the EHCP is taken from the reports. You are given the opportunity to make representations, however the LA are unlikely to make significant amendments before finalising. You would be better pushing the LA to finalise and appealing. Don't go back and forth with multiple drafts as you are unlikely to get far and will probably still need to appeal.

If you appeal it is recommended you just get the mediation certificate and submit to SENDIST. You only have to consider mediation, not actively partake, and LAs use mediation as a delaying tactic, if they are going to concede they will do so regardless. When you appeal an evidence deadline is set, after that you can ask to submit late evidence but it isn't guaranteed to be admitted. There's also the possibility SENDIST will order additional assessments, which will be considered. If you do appeal you will need independent assessments.

If you choose not to appeal, additional evidence can be considered, and the EHCP amended, at annual reviews.

Stressful day with an appointment. The rest of the week isn't going to get any better with DS1's CPA review, 3 more appointments and a meeting with DS3's school.

leapsending strength for week ahead
Muddling i don't think I can give up my room.its the only place I have for guaranteed time out and with all three kicking off I fear my MH won't withstand it
Lil zoo refused school again yesterday.concerned low attendance schoolagreed she attends they will accept her into "the pink room" all-day as long as in site.her response was as long no one challenges me to go to class...this is now being overidden by fear of when Togo(before or after tutor time) despite HOY saying if nec I can take straight to reception and staff will come get her.she doggedly refuses to admit any level of anxiety whatsoever and she's the nausea,racing heart etcas physical
Dd2 starting to wobble/getting a little overwhelmed
Dscouldnt attend school last week as his dad was ill and unable to take him.he had shift change for yesterday's visit so school rang saying home visit Friday I'd he's not in as partsafeguarding policy.im not mad at them,just his bloody unreliable dad.theyre chasing up transport requests for a number of students currently

starry - glad your DS coped with you being away. My trip has been reduced to just 2 days, which feels far more manageable.

Muddling and Anne - I'm so impressed by your determination with the EHCP process. I hope that your DC get at least some of what they need. The system is so completely fucked up - I'm sure that all the money spent on delaying, obfuscating, appeals and tribunals could be used to actually give children and families what they need! I wonder if any research has been done on these budgets and where the money is going. We are right at the beginning of the process, and it's hugely daunting.

leap and zoo - you both sound like you've had/are having a tough week - I hope it goes as smoothly as possible.

We have our originally booked CAMHS appointment on Thursday with our 'home' county team. The actual nurse has been good - hopefully our relationship won't have been soured by my rather robust conversations with her superiors about which health authority should be responsible for DD. I also spoke to our GP yesterday, which was really heartening. He is delighted with the small steps of progress that we have seen, and he said that the tiny signs of enjoyment from DD, like talking about a TV show she has been watching, and asking for some craft supplies, are a really positive indicator of possible long term recovery. We are trying not to be too hopeful as it's too painful when her mood slumps again. Everyone is in agreement that school is a definite no-no this year, so it looks like GCSEs are not going to happen. Trying to have faith that she'll get what she needs when she needs and wants it, and clinging to her mental health being the biggest priority. And so thankful that we can both work from home for much of the time.

BTW - this thread has disappeared from my watch list, and from the MH board for me - I had to find it by searching for thread 3 and following the link - very odd. Anyone else?

Leap - thank you for the information. I'm not getting my hopes up that the LA will agree to issue an EHCP and intend to appeal. If we've got the NHS SaLT and OT reports and assuming they are useful and detailed enough, do you mean we will need to get independent assessments for the appeal? I have looked into it and could do it if necessary.

I have to remind myself that the EHCP is not the be all and end all and ultimately DD2's mental health is the most important thing. If that improves then she will be able to cope better with life and educational opportunities can come later if necessary.

Your week sounds tiring and stressful - I hope you get through it ok.

Zoo - I completely understand you wanting to keep your room. We all need to be able to "get away" and have a bit of time out sometimes to be able to cope. Sorry to hear about the difficulties around school transport which must be hugely frustrating after finding a school you and DS are happy with.

Hope everyone's days goes as well as they can.

Having a really bad day and feel like I'm at breaking point. After a very productive meeting with the head of 6th form where we have talked about support and a plan to try and get my son back through the door, the head called yesterday and spoke to my son who made a promise he would try and get in at some point today.

As the day has gone on and on he's just refusing to engage with me at all. he has eaten breakfast and said he would go in for period 4 at 12.20 but has now just laid in bed refusing to speak.
I asked him several times if he is going in today and he wouldn't answer - I've got a lot I need to do today and need to know.

I did raise my voice and say he needs to be straight and just say yes or no, at which point he laughed in my face called me a pathetic toddler and told me it doesn't matter what he does, he only likes me when I give him money

I know he's lashing out and doesn't mean it but I'm really struggling today, I'm not sleeping and I'm sitting here in tears which he just lays in bed smirking

His dad just says 'ok' to everything I tell him and its not fair. Why is it always me who gets the grief while his dad gets none of it?

Sam you cop it all because your his mum.he needs to know you will always be there
That said our choice of language and tone of voice also make a difference.i was told during a camhs meet with D's today asking if he's ok when he's struggling with something difficult is telling him I need to check he's alright,so is there any threat to be worrying about?
I'd never really thought of it like that,just me making sure he's not getting overwhelmed and unable to verbalise it...
With regards to asking definitive,dd2 cannot give answers on demand with yes and no.i find I'm going to do X in X minutes and if you aren't ready I will do it works better.she has to deal with the choice she makes,no matter if she kicks off might not work for others but does for us as I have 3 sets needs and only one pair of hands!>

Sorry to hear you're having a bad day @SamW98, your son sounds exactly like mine! He will either play dead or tells me to go away and to "cope" when he can see I'm losing patience (which, luckily for him is not very often). That said, after last week's emergency review where they agreed to a special school, I've had a bit of a wobble and wondered if I should have done more to keep him in mainstream. But at the end of the day he has voted with his feet and now missed all of year 9 so far and I have to do something. I had a bit of a rant with him last night, but I made it look like I was "telling my daughter how I was feeling". Any time my ds tried to talk over me I told him I wasn't speaking to him, so he had to listen - and to take on board that this situation is not just affecting him.

Good news - this morning he actually took a phone call with the SENCo and CAMHS. The latter realised that they are so overwhelmed that they forgot to ring me back and also that ds should have had some support sessions after his diagnosis. They were very quick to put us on a parenting course, but didn't support the child!! Anyway they will try to put that in place now.

Trying to sort all this out and work at the same time is completely draining. Glass of wine with my name on it later....maybe one for your too SamW98

Bubble have you accidentally hidden the thread?

Zoo did you manage to get DD3 in to school today? The LA should have sorted transport by now, if you contact them as well as school things might move quicker.

Muddling the burden of proof is on you the prove an EHCP is necessary. It is reports that win tribunals. It is highly unlikely all the reports from the LA/NHS are going to be detailed, specific and quantified enough for tribunal. You may find, for example, the EP report is OK, but you need an independent OT.

LA/NHS reports are unlikely to suggest intensive ongoing therapies "as that is not what happens here", they are more likely to suggest a block of sessions e.g. 6 SALT sessions. Sensory OT may not be assessed or provided at all, not all CCGs commission sensory OT.

When determining what SEP is required, and therefore whether it is necessary to issue an EHCP in order to provide it, it is the reports where the SEP is taken from. Therefore it is essential the reports are detailed, specific and quantified, otherwise for refusal to issue appeals you can't prove SEP is required and therefore an EHCP is necessary in order for DD to receive the SEP.

Just seen this thread, and this has probably been mentioned before, but I found some of the stuff in the book 'anxious parents, anxious kids' helpful.

@SamW98 commiserations.
It's so difficult to not become cross & demoralised at times. I had one of those days too. DS has been lying in bed for days doing very little after showing some improvement. I uttered those immortal words ... You're not helping yourself 🤦🏼‍♀️...
I have to keep on reminding myself that he feels a lot worse than me at the moment.

leap I had a phone call this afternoon he has been formally accepted for transport,now it's will allocation team and hopefully they will have something sorted after half term

Fferny we have all said that at some point
..

[quote Fferny1]@SamW98 commiserations.
It's so difficult to not become cross & demoralised at times. I had one of those days too. DS has been lying in bed for days doing very little after showing some improvement. I uttered those immortal words ... You're not helping yourself 🤦🏼‍♀️...
I have to keep on reminding myself that he feels a lot worse than me at the moment.

[/quote]
Thank you. Its more frustration. I know he can't help his anxiety and we do go very gently with him but today there didn't;t seem to be any reason for him not too even try.

When he's there, he's happy laughing joking and seems to really enjoy it. he's told me he loves his A level subjects and it was totally his choice to do A levels rather than a Btec or another course. And he got his chosen subjects too.

Its hard because his dad and I have engaged with the school, pushed to get a meeting with them and worked to get a plan in place for him but ultimately HE has to be the one who now takes that step and he just doesn't seem to want to listen or talk

Sending hugs to everyone. This isn't easy but look for the glimmers of light. They will be there.

Tonight dd told me she was happy and that I was a cool mum !! First time she has said she is happy in a very, very long time....

Anne that's amazing💖

Anne - that's really lovely