Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

I reported it to the police, they weren't very helpful to be honest they took screenshots of the vile messages but said it will be really difficult to find out who's behind it.
It's on tik tok and Instagram mainly, messages from people she doesn't know telling her to kill herself. I honestly don't know how these people sleep at night

We saw a prescribing nurse
He asked loads questions,which seemed lead to another like
"What happens if routines aren't followed"
"Do you have any thing else sensory you like to do"(was fidgeting dreadfully and spinning a stress toy in her hand)
He was concerned she's never been put forward ASD assessment,and thinks deffo needs one.
I've been told email school and ask ed psych assessment/ASD assessment and EHA (?)
He's reluctant start with another AD as last one was such disaster,and she maybe masking so chunk problems overwhelm which might be better handled with other strategies...
Anyway,she's got script for promethazine to try reset sleep and we see him again in 6weeks,despite her turn 18 before then.he said doesn't hurry to pass users over to adult MH services

Sorry to crash your thread. I've been hovering and reading. I have a DD11 who is displaying lots of anxiety symptoms and I feel a bit at sea. We are at the start of our journey with all this, the school are fairly useless and it seems to have come out of the blue.

I read an article in The Times a couple of weeks ago which I found really helpful. It was basically flagging up this book www.amazon.co.uk/How-Happy-When-Your-Child/dp/1472139011/ref=asc_df_1472139011/?hvlocphy=9045628&linkCode=df0&hvptwo&psc=1&psc=1&hvnetw=g&hvadid=570321680287&hvpone&hvlocint&th=1&hvpos&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforu03-21&hvtargid=pla-1599787133200&hvrand=8751775329601380369
It seems pretty helpful so far, especially the parts around taking a step back which can be so hard to do when you're in the centre of the maelstrom!
I wondered if someone else might find it useful?

welcome oranges
Please feel free to talk about your experiences if you wish.if you've been reading along you will know we are a friendly,non judgemental group
I had a look at the link.looks very promising,thanks for recommending it.good reviews on Amazon too
I've added it to my wish list

hello @Orangesarenottheonlyfruit , thank you for book recommendation, sorry things are difficult I think it often comes out of the blue around puberty and secondary school transition, its like a perfect storm.

Thanks you all for you empathy and support about new school news, and as ever for your good advice @1leapforward2back , the OT is 15 sessions and we have asked for direct payment and the wording made it clear it would be out of curriculum time so really I think its just an excuse, we even offered to remove it completely from EHCP as LA hadnt agreed to it but to no avail, we heard today the HT (who was instrumental in offering us outreach) has resigned and sounds like there is something going on behind the scenes/ change of direction and as a result the offer of outreach was withdrawn.
I thought EOTAS needed to be a package by a provider with maybe a few add ons like OT, could a parent put together their own proposal for EOTAS, using tutors, art therapists , instrument tuition etc? Would that be like asking the LA to fund homeschooling? Not that would be a bad idea!! I cant see the LA going for it but really nothing to lose, the EOTAS provider I found who seemed excellent didnt want to be in conflict with LA at tribunal and LA wouldnt agree to their package or consider EOTAS at all..
I will try and find out who director of childrens services is, I am coming round to the idea of JR, Im getting desperate.

Zoo- Its good they arent moving to discharge to adult MH services (I think!) but mixed news about meds, I hope the new one helps her sleep. Can CAMHS nurse help with referral for ASC assessment? Isnt it CAMHS that do the ASC assessments?? I hope school can help with it anyway.

@cantthinkofabetterusername sorry Police were not much help, I just cannot imagine why anyone would post something like that-what planet are these people on?! There should be much more accountability for what people post online, I hope today has been a bit better for your poor DD

Welcome Orangesarenottheonlyfruit.

Sorry the police weren’t helpful cantthinkofabetterusername

I’m glad the appointment went well Zoo. Someone finally listening to you, although why is he passing the buck telling you to ask school to referring for an ASD assessment? It is unlikely the school will have funding to spend on an EP assessment for a post 16 pupil, so I would go down the EHCNA route. EHA is early help assessment.

Runner in some areas it is community neurodevelopmental paediatricians that undertake ASD assessments rather than CAMHS.

Obviously sensory needs will effect DD at school as well, but if they aren’t being asked to provide anything and sensory integration OT sessions will be separately delivered it definitely sounds like an excuse.


I thought EOTAS needed to be a package by a provider with maybe a few add ons

No, that is just what your LA prefer and would like you to believe. Your LA like to use a couple of different organisations and like to tell parents it has to be that way. The whole package can be individually built around the child’s needs with individual providers. DS1’s isn’t provided by a provider. If the provider you approached was the one with a gymnastic apparatus in its name or the one with the tick they are both in the LA’s pocket.

could a parent put together their own proposal for EOTAS, using tutors, art therapists , instrument tuition etc?

Yes, you can. It is not EHE as the LA retain responsibility for the education. This is a hugely important distinction. Although, to complicate matters, some LAs will provide a personal budget for EHE - which I argue is 99.9% not elective and is the LA’s way of settling for funding less and parents are so worn down they agree when they could likely get further support if they persisted to pursue EOTAS.


If you can’t find the Director of Children’s Services let me know and I will find it you and PM it.

My brains turning to mush leapEHCNA is....

Education, Health and Care Needs Assessment. The needs assessment prior to the LA issuing an EHCP, or not. The part of the process where the LA seek advice from a variety of sources including an EP.

Thank you leap, that's so helpful.
The eotas provider we found is the one with the tick .
I knew they were in LAs pocket when they told me in January they had to reduce the provision outline they'd given me and couldn't be seen to go against KCC at tribunal.
However I have a telephone call booked with them.on Monday to discuss if they can still meet DDs needs and provide a provision plan we can take to KCC .
They are also trying to open a school and get dfe registered by September.
Really interesting that you can source and put together your own EOTAS yourself, LA would never agree to that out of tribunal ( in fact I don't think they agree to anything until parents appeal)
But definitely worth thinking about so I feel more positive now I know there's something I can do.
I think I've found head of children's services/ education.
Thank you.

My kid had extreme anxiety, and irritability. To the point he started hitting his head against the wall :( We are on week 2 of zero screens (no iPad, no Tv, etc) ….and I have to say, his mood has MASSIVELY improved. Don’t know if it’s just a fluke, or what. But I think he is sleeping better, which means his mood the next day is a lot better. And because he doesn’t have screens he is outside playing football/scooter etc so more tired and therefore sleeps better too.

Hello sunshine pie, pleased your DS is improving, I think too much screen time is definitely detrimental.
Has DS had any assessments for ASD/ ADHD? I only ask as my cousins son hit his head against a wall repeatedly when he was upset and frustrated ( which he was a lot of the time) and he was later diagnosed with autism.
Pleased you've found a strategy that is helping.

Always good to find a strategy that helps sunshine
Outs is fresh air and walking in nature...
On that note off out to enjoy the sunshine with dd2 and ds

Welcome Sunshine.

Zoo enjoy your walk.

Runner they don’t like giving parents DPs, instead they prefer to use third parties. If you ask the LA to they must identify a personal budget unless the funding cannot be disaggregated because it would negatively effects LA services or it is inefficient use of resources. A personal budget can be delivered in a number of ways, one of which is via Direct Payments. You can request DPs and the LA should comply unless they believe you aren’t capable of managing the monies, you would use the funds inappropriately, it would negatively effect other LA services or it is inefficient use of resources.

DS1’s EOTAS is funded partly via DPs and partly by the LA funding directly - our choice to lighten our workload.

Lots of alternative provisions are trying to become registered schools due to OFSTED’s crackdown on illegal unregistered schools. The crackdown means they are losing service users/money because there is a limit to the provision they can provide, whereas they would be able to provide more if they become registered schools.

DS1 headbangs as a form of self injurious behaviour p.

DD is nearly 20, suffers with depression and is autistic, she lays in bed for days just sleeping, clearly depressed. The pain i feel seeing her suffering is unbearable, its like a knife twisting in my heart, i get upset and DH just looks at me like I have two heads.... He just doesn't get it

DD did go out yesterday, great I think.. however she text me to say she would be late home. It wasn't even that late, she came home at 9pm and she had text me to let me know. I don't why where she went and she is unlikely to tell me. Ffs, why am I worrying, she told me that she would be late and came home at the time she said she would

She is back to being in bed today, she hasn't washed her hair for months (she puts her hood up/wears a hat to cover this up)

The depression started at 15 and it has been horrible to watch, just wish I could have the pain for her

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@ sandwiches77 - I emphasise, as the saying goes "you are only as happy as your least happy child"....
DH also is good a compartmentalising and switching off, he worries but not as much as me and it appears not to impact him as much. But he also doesn't carry most of emotional or practical stuff-, the appointments, the talking to school, camhs, the research/ reading , DD wanting to talk in the middle of the night, he doesn't seem to feel the guilt or responsibility in the same intensity at all.
It is so good your DD went out, I hope its a glimmer of a positive change, will she talk to her GP ? Is she getting any support or medication?
Be kind to yourself

Thanks again leap, I've tested positive for covid and feel pretty rough, haven't got brain power atm ( or possibly at all!)to digest all you advice.
What's the difference between personal budget and direct payment?
Is personal budget managed by LA?
Can you have personal budget for one aspect?
I have phone call booked with EOTAS provider ( the one with the tick!) who we first spoke to after we couldn't find a school.
Will see what they say, haven't spoken to LA yet, I'm.hoping EOTAS provider will put together a provision plan I can get LA to agree to. I really don't want to take on anymore work than I have to .
Just had a phone call from camhs re TIC referral , was told after attending an information day that DD would be offered an initial assessment within a month, that was in January, now they seem to want to pass us to a different team. Person I spoke to was informative however she is trying to determine if DD has functional Tics or neurodevelopmental tics or both, my feeling is we won't be getting an appointment any time soon!

sandwiches I don't live with their dad,but again he doesn't get particular upset over anything that happens.its frustrating and makes you feel very much alone,doesn't it?
Runner hope you well better soon

Runnerduck34 struggling to look after myself and finding DH no support at all, he just switches off to it all. I feel so alone with it all.

@ sandwiches77
So sorry it's so difficult right now, caring for a child with mental health issues is draining physically and emotionally and I think isolating, there aren't many people that really get it, including family members sometimes!
Do reach out here if you need to, I find this group to be a source of solace and comfort as everyone here " gets" it.
I know it's hard but you are not to blame for DDs difficulties, all you do is be her advocate and support her as much as you can, it can be harder when they are an adult as they have to be responsible for medical appointments etc themselves.
DD had just had a change in medication and it has made a big difference as has stepping back from the pressure of attending school( she wasn't attending but we still tried to get her in every day) so I suppose removing all pressure ( which in turn made me less stressed) and medication have helped her.
But do try and regularly make time for you -walk in the sunshine, Reading a novel, going to the gym or meeting up with friends anything just do something for you as you can't run on empty.

Runnerduck34 i just feel so overwhelmed by it all that I don't have the energy or motivation to look after myself

I just feel like someone has thrust a knife through my heart and twisted it, the pain of seeing my DD struggle is unbearable. But when I try to talk to her about how she is feeling, she just huffs or rolls her eyes at me

Sandwiches have you had any counselling? Is DD receiving any support?

Runner oh no, I hope your start to improve soon. It’s the last thing you need.

A personal budget is the overall notional budget necessary to deliver the provision in the EHCP. A DP is one way of the PB being delivered. The PB can be funded in different ways:

• Direct payments whereby you are given monies to organise provision yourself.
• LA or school controlled funds where they commission support directly.
• Third party arrangements where a third party, like the EOTAS provider, are given the funds to manage on your behalf.
• A mixture of 2 or 3 of the above. Which is what we have for DS1.

You can have DOs for only part of the provision. However, if the provision takes place in a school or college the HT has to agree, and DPs cannot fund a school place.

Surely DD needs an appointment in order to help determine the nature of the tics? DS1’s motor tic is functional. He has a few other functional behaviours too. But then he doesn’t have ASD.

No to counselling for me and no DD isn't getting any support

You could self refer to your local IPAT service for yourself, and ask social care for a carer’s assessment.

If DD is willing you could refer her to the IPAT service, ask for an assessment by adult social care and apply for an EHCNA for her.

Sandwiches - it is so very hard. You have to try to take a step back for a moment each day and work out how to look after yourself. My therapist used to say to me 'you can't pour from an empty pot'

tiktok my fave phrase is you don't let you phone battery due,so why let your emotional one?
Sandwich who can you talk to in RL lovely? A family member/friend?it's exhausting dealing with it all.you need an outlet,and you need some thing for yourself
I know that's bloody hard,I have 3 with varying needs and I live alone with them so totally get I don't have time.even ten minutes makes a difference

Sandwiches , would DD talk to a GP, perhaps with you present? A combination of medication and counselling may really help her and ime it could help you as well, caring for DC with MH issues takes it toll.
Leap offers really good practical advice.