Parents of anxious kids/teens support thread(part 2)

[Stilllivinginazoo]

Hi everyone
Our original thread filled up fairly fast so I'm offering a second one
Anyone who cares for a child/teen with anxiety can join us as a comment,or hang around
Post your worries,your tips,ask for advice,rant about your day -we understand
Also feel free to share any small victories

I should add we doing it at 3pm,out of school hours so will be very quiet

Hope everyone's doing ok
I passed thru local nature reserve the other day.an old barn in middle does tea/coffee for dog walkers and hosts mum's n tots etc.we found out they looking for volunteers to help gardening.signed D's up saying would always have adult with him
We went along this morning to first session
Had great time.2hours planting Poppy seeds,little weeding and replacing wood chipping onto pathways.its a small group(4)and everyone was so kind and friendly.meeting again in two weeks.hopefully will have some fruit trees to plant then

Wow Zoo, lots of positives this week. I hope next week brings similar successes for you. I'm glad this morning went well. Hopefully with DS' volunteering and if can manage the outreach centre he will be less socially isolated, which I don't think helps. It's something I worry about with DS1.

Zoo - I’m absolutely elated for you and the DCs!! Well done

Viking!so lovely to hear from you!!how's things?

I am mindful we only have 19 more posts left...I cannot for the love of God link things so my plan is once we are down to ten oats set up a new thread and hope someone can link to it!!

Zoo - that's really fantastic. Hopefully positive steps will encourage more.

1hop - I hope ds1 is ok?

Dd really struggled this week but by refusing to go in, and the student support officer seeing her so desperate one morning, I have seen a bit of a change now in their language and how they are addressing matters. I am attending a meeting next week with the sendco and all of her teachers where her needs will be explained, as they have realised she is presenting very differently to any child with asd they have had before ! :/ by going in I can answer any question direct to teachers. And if they have all been told verbally then there will be no excuse for repeated failings as far as I can see.

Anne sorry she's struggled so much this week,and good news that staff should all be up to speed soon and all offering same level of support!

We off to view a therapeutic school setting tomorrow,kindly driven by our rev from church as DP has to workit's out of county and a huge challenge for him to travel there in unfamiliar car,and cope in a school setting first time in a year.
Dummy run yesterday with dp so we aren't running at everything totally blind.planning take a favourite cuddly toy along in car,something to stroke/cuddle

Hello! Hello all!

Have I found my people??

Have had a horrific month with dd (Y10, aged 14). She was diagnosed with ASD aged 8. Struggled with primary school (anxiety, overwhelm of environment, energy needed to cope with social environment etc., she also has slow processing speed and working memory.) Struggled since Y7 (same issues). Has been seeing school counsellor for quite a while, self harming for a year. Now having multiple intrusive thoughts of committing suicide. She’s made of tough stuff actually, but has been in crisis. Tried part time timetable plus the usual stuff (time out pass, time in Wellbeing). Now school agreed to drop one GCSE. dd now settling back into school (although still hating it but being out and having multiple meetings was more unsettling). Start CAMHS proper tomorrow.

She has been masking so well that even I started not to think of her in terms of ASD.
But she’s just got a PhD in masking..

I’ve been dealing with this for years (I think we get so used to it) now been signed off sick from work while I get dd back to school (she did 2 full days last week, j feel like she just pulled her socks up and got on with it to shut us all up).

My question is, to all you lovely people, do I trigger application for EHCP? Do I do it? While I’m off? Am petrified it will pit me and school at loggerheads (they aren’t much bothered about further assessing her needs as ‘achieving fine’) and be a horrible and protracted process. Which will end in tribunal.

Thoughts very much welcome.... it’s all very scary. But I think I’ve found my people!

Zoo, I will keep my fingers crossed the school visit goes OK, and you think it will be suitable. Good idea to do a practice run. It removes part of the anxiety around the unknown.

Anne, I am sorry to hear school isn't getting any easier for DD. I am a little bemused that the school haven't seen an ASD presentation like your DD's. From your posts she has many classic features of ASD in high functioning teen girls. I wonder whether they have, but haven't recognised it for what it is, so the pupil(s) have flown under the radar as girls so often do. I hope the meeting helps.

DS1 is OK. Had a massive meltdown this afternoon because he didn't want to leave the house, nor did he want me to leave him. Unfortunately I had already told DS2 I would take him for ice cream as a reward for getting an award at school. He's still awake, DH is trying to settle him. Still trying to work out how to improve bedtime for us all.

Professionals at the last CAMHS MDT disagreed on the direction DS' treatment should take. We have been given the choice, but can't decide. I worry about making the wrong decision. Is anyone willing to give us your opinion?

Option 1) We carry on as we are in the hope that making little gains with the therapies he currently can manage one day allows DS to be able to engage with EMDR or trauma focused CBT.

Option 2) Plough ahead with EMDR even though it is unlikely to be completely successful given DS can not engage. The hope would be once EMDR has started DS' ability to cope with increase as the therapy works and as he becomes accustomed to the therapy and as he matures.

Option 3) Swap medication to see if it works better.

X post Latent, welcome.

Do apply for an EHCP. IPSEA have a model letter you can use.

Have you heard of parental leave? If you have a disabled child you can take single days. If you need some time off, but either don't want it to be sickness absence or can't get a fit note you could try that.

Try to be honest tomorrow, it's easy to play down problems.

Thankyou, onehop is that the same as carer’s leave? Is there an allowance specifically for parents of disabled children? I do claim DLA.

Thanks for advice re EHCP.

Re CAMHS - dd has had her assessment with psychologist (who was very good). The appointment tomorrow is with the actual worker. Will that be completely confidential and 1:1? Does anyone know whether or how dd’s progress will be reviewed? I was just so pleased to be taken on after years, I forgot to ask.

Sorry for all the questions. And thank you!

Unfortunately parental leave is unpaid, but some parents prefer parental leave to sickness absence. I am a SAHM, but DH has previously used most of his allowance. Your employer can delay your leave if it will cause significant disruption to business, but DH's company are brilliant.

There's carer's allowance, but unless you earn less than £123 after deductions you won't qualify. If you get tax credits or universal credit make sure they are aware DD gets DLA. Depending on your household income investigate Family Fund grants. There's a few other charities that can help too, and things like the warm home scheme, CEA card, bus/train pass, LA carer's grant.

Have you had a carer's assessment for social care and an assessment from the disabled children's team for DD? If not do ask for them.

CAMHS may be 1:1, or they may invite you in too, at least for part of the session, or there may be more than one worker. Other than a couple of exceptions, discussions are likely to be confidential. Sorry I can't answer how progress will be monitored, it will be area specific. If you don't already know ask who you are seeing e.g. Clinical Psychologist, psychiatrist, specialist nurse etc.

New to this thread and just wanted to off load..
dd is now being assessed for ASD after two years of no school and no support from anyone. I gave up work to care for her and stupidly started a MA at the same time. We have no RL support and live very rurally. Struggling at the moment and tearful all the time just want to throw in the towel with course but so near the end (May) but can't see wood for trees. Exh is no support and I'm so tired battling to get her help. She sleeps all day and paces all night. Hoping the antidepressants they have put her on will kick in soon. Thanks for listening.

latent welcome.we are a friendly bunch,onehop has been amazing since she joined us with lots practical advice on ECHP,allowances, ASD.we also practise a non judgement policy.offload with us and share small victories.as parents we know how hard it can be and why support is so important

On another day please feel free to offload anytime.without RL support and so many balls to juggle it's understandable you feel so exhausted

Onehop if you try a change of meds are you able to revisit other options?

We have 10 posts left.
I've set up part three in mental health
Anyone can link please link old to new

Good luck this afternoon Zoo

The aim of changing medication would be that it would hopefully help more and then he could access EMDR - which is the ultimate aim. So, I suppose we would change medication and if improvements didn't occur we would be left deciding between option 1 & 2 again. DH and I are going around in circles trying to decide.

On, welcome. Sorry to hear you are struggling. If you feel as though you need a break from the MA could you ask for a leave of absence? Is DD receiving any education? The LA have a statutory duty to provide education to those too unwell for school. Have you applied for an EHCP?

Thanks for the new thread Zoo. I will link in the new one.