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

Viking it's a hard path to tread and if your family are supportive of that it says volumes about them,not you

I'm sorry the boys are finding things so difficult.teen year hormones and ASD + anxiety are a horrid combo,puberty alone is difficult enough!

Sending hugs

I forgot to say D's can now find a bowl and fix his own cereal.he still needs reminding to put milk back in fridge and bowl in kitchen after but this is huge progress on independent front that's had massive amounts of resistance as he feels me doing it is showing my love for him.
We are working on buttering bread/assembling sandwiches-terrified of cutting self on tuna cans/using sharp knives to cut tomatoes etc .this one's deffo still a work in progress!

zoo thank you - I really think they don’t understand the full extent of challenges, despite me trying to explain. Granted, I shelter my mother from a lot of it. She is old and prone to anxiety so it’s not worth it to either of us to be completely honest with her.

Oh my - yes - I wish DH would understand why DS2 especially struggles with putting dishes etc away and other skills we take for granted. Totally relate to your DS’ independence skills - well done on his progress!!
How is he with personal hygiene? DS1 was pretty good until Covid, and now is quite lazy. His reasoning is if he doesn’t need to go anywhere he doesn’t need to do anything. DS2 has begun looking like PigPen from the Peanuts comic strip. Ok, not quite but he has regressed with personal hygiene since the pandemic began. Hates getting his hair cut, hates bathing and brushing his teeth. I even ordered an unflavoured toothpaste from the UK to get him on board. It is such a struggle. So much resistance.

Sending hugs too

Viking he is at stinky teen stage and is a total Soap Dodger and getting deodorant near him is hard work..he has got better with teeth though,mainly as been referred hospital for orthodontics.i spend big chunk of time saying have you put on deodorant/you start whiff why didn't you etc
He too doesn't see the need if not leaving the house/only pop out to shops then retreating back to PJ's/underpants(dep how hot it is).he also wither can't smell himself,or doesn't mind!

Like the rest of the house he's deffo a work in progress🤣

Either not wither!!

Hi everyone
Sorry I haven't been around for a while. I contacted mediation today about EHCP as LA still not got back to us about ehcp reconsideration.
Now to wait for appointment within 30 days. Gives us breathing room to prepare the appeal paperwork.
Dd is up and down. Some positive progress with school, anxiety and eating. Ocd is back again.

I hope you are all managing with your little ones...

Zoo DS is making wonderful progress recently. Managing Church is quite an achievement having not been for so long. Next time you can remind him how well he did and that he can do it even if he feels anxious beforehand. It's good you had time for adult conversation too. Would an electric can opener help with the tuna?

It is good to 'see' you Viking. Just to warn you, if the toothpaste is oranurse DS3 didn't think it was actually unflavoured.

Some people think I baby DS's, and they are probably right to an extent, for complex reasons. I don't care anymore, they don't live my life. We have ground to a halt with independence skills again. Like others on here DS's are so resistant, especially DS1. We still brush DS1's teeth and closely supervise DS2&3. They still need help bathing - from washing DS1 to sending DS2 back to actually wash rather than just stand under the running water. Please don't judge.

Anne do you think the OCD rearing its head is in response to coping with the demands of school and eating? Experts advise not bothering with mediation and just get the certificate. LA's use it to waste time, if they are going to concede they will do so anyway.

How are DC coping with the heat? DS1 is very grumpy with it.

jumpno judgement here.ds has long hair and he cannot manage to wash himself as showers not very powerful,and co ordination with a jug is painful to watch and he cries neck hurts as takes so long try and get suds out.he wants it long at let's me wash it.no harm I say.i also have to remind washing involves soap and rubbing with hands, sponge or cloth and just getting wet doesn't count!
He's still terrified of sharp edges on tins/knivesbut I happy he's making any moves forwards especially as he's very stressed about changes afoot

DS HATES the heat.scared of moths he won't have windows open once dark as he has door open or a light on and moths are inevitable.he gets cross not allowed on PlayStation if very hot either as it heat up his little room and makes upstairs stifling.our indoor cats don't grasp dangers wide open windows so those without locks on are open same distance anyway.ds won't sleep with fan on,fearful will catch fire in night
He slept downstairs on sofa opposite me last night

Refused a walk today as we had gasman here first thing so we couldn't do early morning stroll and attempts at an evening one yesterday were mistimed given the heat so it was hot.i took dd2 out tonight at 7 and was warm,but lovely in the shade.im looking forward to it breaking tbh

Hi everyone
Quick dip in to ask for advice from 1step...

The LA have agreed to reconsider dds EHCP case as we have new evidence. We requested mediation on Friday, coincidentally.
I can get a private OT report included and her new ARFID included as well as the LA Ed Psych report which they already have.
Anything else I should try and ask to be included?

Hello all.

Good to hear from everyone else hanging in there on the rock face of parenting.

It's been a month since our last trip to A&E with DD1. She sat all her remaining Y10 exams (her choice) and has done well across the board. This has done wonders for her self esteem. I do think medication and a few talking-tos by body doctors (as opposed to head doctors) have helped.

Most of all being back in the real world as opposed to teen dysfunction TikTok or tumblr means she has more balance.

She is covered in awful self harm scars. But now lets them show - partly because it's hot but more I think because she wants us to know they are healing. I'm sad that we couldn't forestall this and if I'm honest fear the judgement of others that I couldn't keep my child safe from harm.

But loving seeing more of the person she really is.

tee that sounds so much more positive
I'm genuinely pleased to hear things have been better

Hi everyone
Tee- thats sounds really positive, so good to hear!
Anne-wishing you lots of luck with medication and appeal, the whole EHCP process is a nightmare, Im sure its designed to fail chilldren and stress out parents.
DD needs gentle reminding to wash, I usually offer to run her a bath with favourite bath products to tempt her, hot weather isnt good for reluctant bathers! She also wont let me open her bedroom window in case flies or moths get in.
Jump you are totally right not to care what others think noone walks in your shoes-just do whatever gets you through

Tee that is amazing progress.

Zoo Runner DS1 can't cope with flies/bugs either, he becomes hysterical.

Anne remind me, this is a refusal to issue isn't it? Not refusal to assess? So DD has already been assessed by all of the following
"a) the child's parents or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child's parent or young person reasonably requests that the local authority seek advice from."
SEN regs 6(1)

As well as OT, under H I would think DD needs SALT and psychiatrist &/or CP reports. I know DD is under CAMHS but you need reports written specifically for the EHCP otherwise provision is likely to be vague and woolly.

For someone with DD's needs I would expect an EHCP to include OT, SALT, ELSA and some kind of therapy at least. Also, some input from the autism specialist teaching service.

DS had visit from inclusion officer today.she bought a certificate for attendance and excellent online engagement.school doesn't finish til tomorrow night,but given not even semi online provision since only available teacher went on paternity leave and it's been a very basic project ment last two weeks completed in two hours then just check ins with inclusion it's agreed today's meet signals end of his time there.she wished him luck and said email her how he gets on in sept as tries head back into school setting(she's very surprised it's a unit in part of a big,busy secondary and has expressed concern how he's ment to manage it).she said he's the most able student they've even been asked to take on,and sorry online couldn't offer him the level of work he was capable of

Sorry for the essay

Thank you so much 1jump.
Super helpful.

I have been sent a mediation date so just checking school and OT can make it.

I am getting new OT report and writing a new statement, plus collating all new medical letters etc for submission. There has been no consideration about future care needs as far as I am aware, and nothing for SALT or autism specialist.

Hello. Just found this thread. I have a 15 year who is autistic (HFA recent diagnisic) who suffers with anxiety. After about a year and a half of no education she us currently accessing 3 hours per on a good week. My beautiful bright dd will be lucky to pass any GCSES, has no contact with friends. CAMHS have been non existent at times and at other times have made things worse I feel . Strangely we are on a fairly even keel now especially as school finished but glad I found this thread .

backofbeyond welcome
Is she going into year 11 in September?
My D's will be.he has had no proper school access for 3years.hes deemed very bright,autistic(diagnosed last year)and is classed highly academically able.i have no idea yet what GCSE year will bring

Zoo, Anne, 1jump, Runner

Thank you all I do really really appreciate your support and best wishes now and over the last year or so since I checked in.

Zoo please don't worry about the long post this is what we are all here for. I appreciate this thread so much because I get the sense that none of us here think there is one magic solution that will fix everything.

Re our ECHNA everything has gone quite quiet. I expect an LA refusal but as said before am convinced that attendance is the lever. It shouldn't be but hey ho.

DD1 is chuffed with herself re grades and school report. As she should be.

We'd planned to travel this Friday to an EU country where DH has family and where we go every year. Nixed last Friday as they have red-listed the UK due to Covid rates.

Pivot - going to Ireland to see my family. Haven't seen my mum and dad since Feb 2020, my DSis1 since Oct 2019. Or any of my wider family. DD1 delighted as she has several cousins she'll love seeing. DD2 and DH slightly meh.

(To be clear, we're not staying in an upscale resort but at my aunties around the corner from my parents.)

Bracing a bit for the judgement but hey ho

Visiting family will never be judged here(or I'd hope not)
Travel is a very personal decision at this time,and whilst some embrace it,others won't tee
We make choices based on what's best for our own family unit

@Stilllivinginazoo hi. Yes about to go into year 11. Will probably sit English Language, Maths and combined science if well enough. Missed pretty much whole of year 9 and only 2 hours a week 10 though so no guarantee she will pass.
Good luck to your DS.
Applied for EHCP do hopefully will be granted and she will be supported post 16.

I'm told D's most likely be offered same your DD,then can take other GCSE post 16 if desired with EHCP

Welcome Backofbeyond. Where are you in the EHCP process? When DD is able the LA should be providing more than a couple of hours a week of education.

Tee enjoy your holiday. We were supposed to be going to France. When we suspected it may be cancelled we booked something here, only they cancelled our booking and relisted it at more than double to price. Are the LA sticking to the EHCP timescales?

none of us here think there is one magic solution that will fix everything. Oh yes, if only there was!.

Zoo you don't need to be ashamed.

Teens often think the grass is greener elsewhere and when the novelty wears off they realise it's not but don't know how to back down. Being able to make eye contact does not rule out ASD. If DD3 does have ASD CBT doesn't always work, and when it does you need someone trained in adapting CBT for ASD. Is DD1 willing to help put rules and boundaries in place? Any chance of you all doing something together with no pressure to speak or DD3 come home?

There's a whole host of different outcomes STAR assessments, I presume you are completing the family star. They allow the professionals involved to offer targeted support where you most need it.

If you have the energy, follow up the inclusion officer's visit with an email thanking her for coming and mention her worries over September's placement and DS's academic ability. You never know when the evidence will be useful, especially if the new placement breaks down.

@1jumpforward2back thank you. We have had an agreement to assess. We'll I think that's what you call it. I don't reckon we will get more than 6 hours per week unless a miracle happens and she returns to school. I am not confident that her current school can meet her needs but understand provision for HFA children can be difficult.
I think the EHCP is more for post 16 as the hospital school tutors only go up to year 11.

The LA have a statutory duty to provide a suitable full time education to those unable to attend school. The only reason it doesn't have to be full time is if due to physical or mental health needs it isn't in the child's best interests. Full time doesn't necessary mean school hours if for example it is 1:1 but it should be more than couple of hours a week.

An EHCP is important even whilst compulsory school aged as it can provide way more than medical needs tuition can, and it gives legal protection. They can include therapies and it allows you to name specialist provision too, or EOTAS if that is more appropriate. There is provision out there that caters for HFA.

What week are you on? Make sure the LA stick to the timescales and seek all the necessary assessments. As well as the advice the LA must seek you should request OT, SALT and a psychiatrist &/or CP assessment. You need to make sure all the right assessments are done and the the reports are detailed, specific and quantified otherwise the provision in the EHCP will be vague and woolly, and therefore not worth the paper it is written on.