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Parents of anxious kids/teen support thread(part 4)

999 replies

Stilllivinginazoo · 09/03/2021 16:49

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

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Bubbleswithsqueak · 31/10/2021 06:53

Glad half term has been a bit calmer for most - I ended up with an inner ear infection and had to stay in bed for 4 days - I think sometimes your body forces you to do what you need to!

We are waiting for the CAMHS worker to come back from annual leave and provide her report, then we can get the EHCNA application in. We have supportive letters from psych and GP, and hopefully all reports will say the same thing. We are asking for EOTAS (online provider, but private one that will see her through to A-Level and won't put pressure on her to engage). I also think she is likely to need an extra year to catch up. If there was any common sense in the LA, they would just issue the EHCP - what we are asking for is simple, all the professionals say that she is completely unable to return to mainstream school, and actually the online school costs less than a place in a maintained school! But I think we may well end up in a position like Muddling - no SEN provision previous to this crisis, so no 'evidence' that she needs different provision.

Fferny DD has also cut and dyed her hair (I cut it - very short - terrifying!!), and has asked for an appointment to have ears pierced again (which involves contact with a non-family member, so she must want it really badly). I'm taking it as a good sign of exploring identity - it feels quite healthy. She has ordered a few more craft supplies, and birthday pressies for two friends, so I'm counting those as wins - anything that implies that she thinks she will be alive next week feels positive.

I might need a handhold tomorrow morning - I have to go away for work today, staying overnight, and DH has to take a dog to the vet in the morning, leaving DD alone for an hour for the first time. She's not in distress, she doesn't self harm, and she has more opportunities to do something (if she was going to) during the night when we're both asleep - she's unlikely to even be up before he gets back. But it feels like a big step.

Best of luck to all those with DC facing the return to school in the morning.

Fferny1 · 31/10/2021 10:37

That all sounds very positive @Bubbles.
This sounds as though your DD is regaining pleasure in certain activities, which is lovely to see. Do you think the change in external appearance is a sign of the inner turmoil they've been going through?

1leapforward2back · 31/10/2021 12:29

Lots of positive steps forward recently for posters' DC, hopefully it continues.

Bubbleswithsqueak don't wait to submit the EHCNA. You have enough evidence DD meets the low threshold for an assessment, and you can submit further additional information when you receive it.

An adequate EOTAS package via an EHCP should not be cheaper than a maintained MS. If it is it suggests it doesn't cover all needs. EOTAS should be more than just an online school. There should be other provision and therapies too. EHCPs can last until 25 so don't worry about needing extra years.

In the meantime the LA should be providing DD with an education under s19 of the Education Act 1996.

Stilllivinginazoo · 31/10/2021 14:25

bubbles I'm around if you need some one to listen tomorrowFlowers

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alwaysscared · 31/10/2021 17:41

Happy birthday to me. DS woke up and decided he wasn't in the mood for it to be my birthday. He's been extremely anxious all day and his upstairs when his grandparents came round. He is getting worse and worse.
Hope you are all doing ok.

Stilllivinginazoo · 31/10/2021 19:49

Oh always I'm so sorryFlowers
If its consolation lil zoo was awful on my birthday and I only got a card from an old mum at school gate friend,no gifts,cake or fuss.my own fault i guess,I should've planned and fussed over myself
Sending big hugs lovely.xxx

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alwaysscared · 31/10/2021 20:15

@Stilllivinginazoo aww that's shit for you (sorry if you don't like swearing, I'm in a sweary mood!)
I did get some nice gifts and cards so not all bad. I'm just sad seeing all the kids going out trick or treating and DS wants to but can't. Mind you, it's pissing it down so I'm secretly a bit relieved 😂

Stilllivinginazoo · 31/10/2021 20:26

Yeh,least you aren't getting soaked!!
I've had a day with my DC today.ive watched scary films with the girls and now we are all watching hocus pocus togetherthey've eaten fun party things and decorated gingerbread pumpkin shapes too

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MuddlingThroughWithoutAClue · 31/10/2021 20:27

@alwaysscared Happy Birthday - sorry your DS wasn't able to help you celebrate today.

DD2 was in a very strange mood on my 50th last year so it's not one I like to think about too much.

Hope he has a better day soon and you can celebrate more then. There is a silver lining in not bring out trick-or-treating in the rain!

alwaysscared · 31/10/2021 20:51

@Stilllivinginazoo that sounds nice. My DS won't watch any sort of film as he hates that he doesn't know what's coming next.
Maybe they get anxious on birthdays as they know they need to try and be happy/excited and it's too much? Who knows.
@MuddlingThroughWithoutAClue I have hope that better days are coming but it just seems worse and worse at the moment.
Not looking forward to going back to tutor and homeschooling after half term! Wanting to hear about his ASD assessment results asap!

Stilllivinginazoo · 31/10/2021 20:59

always dd2 sees it as a pressure to not ruin things/to be ok

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Bubbleswithsqueak · 31/10/2021 21:34

always - sorry you had a rubbish birthday. Would some sweary Gin or Wine and Flowers help?

Fferny I am hoping that the new 'look' is about her feeling able to be more herself now that she's not in school. And it just feels wonderfully normal for her to be dyeing her hair - just the fact that she's bothered to do it is a plus for now I think.

Leap and anyone else - what else should we be asking for on her EHCP? Therapy is coming through CAMHS as soon as she is able to engage (and they haven't kicked her off the list for not being able to engage at the moment, so that's good). Educationally there isn't any support she needs, really. Just to be able to access education without any interaction with people in the short term - hopefully she will be able to interact more if/as she recovers.

Thanks for the support zoo - her and DH are having a film night without me tonight, which is bittersweet because she probably wouldn't do that if I was there. But she's downstairs, and engaging with him. I will be holding my breath tomorrow, but she's pleased that we are trusting her.

alwaysscared · 31/10/2021 21:55

@Bubbleswithsqueak unfortunately I don't drink, but I did get two bunches of flowers, one from DS, he always tells DH to get me flowers 🥺

1leapforward2back · 31/10/2021 22:26

Always Happy Birthday. I'm sorry it hasn't been the easiest of days. Someone once told me the hardest days are those others expect you to be happy. They were right.

Zoo your day sounds lovely.

Bubbles holding your hand for tomorrow.

1leapforward2back · 31/10/2021 22:32

Bubbles your first hurdle is getting the LA to agree to assess. Focus on that first. You don't need to worry about asking for provision in the EHCP just yet. As part of the EHCNA must seek advice from:
"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)

For someone with DD's needs I would suggest H should include SALT, OT, psychiatrist &/or CP, at least. Even if DD currently sees these you need a report written specifically for the EHCNA. Provision in EHCPs is taken from the reports, therefore if the reports aren't detailed, specific and quantified the EHCP won't be either, then it isn't worth the paper it is written on. The report should highlight DD's needs and what provision she requires.

Anything that "educates or trains", including therapies, should be in section F of the EHCP, and therefore the LA are ultimately responsible for ensuring it is provided, even if the NHS deliver it. This is vitally important because then it is appealable and enforceable. If the NHS can't or won't provide it the LA must commission independent providers. It allows a greater range of therapies without the need to sit on waiting lists, at a greater frequency and for a longer length of time.

For someone with DD's needs I would expect at least OT (including sensory OT), social skills interventions, SALT, ELSA, independent daily living skills and some kind of therapeutic MH therapies.

Education wise - what about specialist software and assistive technology, touch typing programme? Does DD need a 1:1 or mentor to keep her on track/help with planning/organisation? Is online schooling with other pupils going to work? Or would either F2F or online 1:1 tutoring meet DD's needs better?

You could make a good case for some kind of exercise (DS1 has swimming, rebound therapy, physiotherapy that is delivered partially by a specialist physio and partially by a specialist personal trainer). I know others have secured horse riding, climbing, specialist PE teacher, football, kayaking, gym membership and equipment. Someone on MN has a chef delivering cookery lessons. I know someone who has funding for the Arts Award.

Other provision I know of includes a Care Farm, funding for an extracurricular book club and an extracurricular coding club.

The good thing about an EOTAS package is it is unique to the child depending on their needs.

1leapforward2back · 31/10/2021 23:13

Bubbles I forgot other provision I know people have as part of an EOTAS package are singing lessons, music lessons and a drama class.

1leapforward2back · 01/11/2021 14:43

Bubbles I hope this morning went OK.

StarryNight04 · 01/11/2021 15:04

Hope all those back in school today got on ok.

bubbles hope this morning went ok too.

always ds reacted badly to my birthday a while back, seems to be a common issue, maybe it's the change in routine that triggers them?

Hope everyone is doing ok, ds is doing well, progress being made and home life much calmer. I don't often feel like I have much to contribute in terms of advice but remain grateful for the support on here and just being around people who "get it

Stilllivinginazoo · 01/11/2021 19:29

Been thinking if you today bubbles
Starry we don't always need profound wisdoms just a tribe who understands is often biggest comfort I've found

Well dd2 did "ok" today-- helped only scheduled lesson didn't happen as staff off,so was in frees all-day.did get some work done,and chatted few people.ate a couple smallsnavks.id call that a very good day tbh
Lil zoo wasn't so happy.her chat head of year ended up be 5minutes as had multiple people pressing for her time during which told lil zoo if wants access link room how to register she's there and left it at that.of course she says won't go as she's fearful staff will ask why she's there..so nothings achieved.shes begging not to have to go ever again..I had washed a her bedding,comfort blankies and cushions so wasn't happy had wash herself
Opted a wallow in the tubthink her hair was wetted in bathwater rather than washed but heyho.i washed bed extra scent boosters so smelt lively.new duvet cover on extra soft duvet I found.soft fluffy blanket over sheets and another between her and duvet so it's extremely snaffly,she eagerly allowed me tuck her in and snuggled down with a smile.givsn she wouldn't eat snack not even sweeties and only wanted cream cheese on toast with garlic and some berries I'm surprised we even got a smile,so I'm taking my small victory!!
I've email HOY asking may she go to pink room all day tom,we shall have to see what she says..

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Bubbleswithsqueak · 01/11/2021 21:25

Thanks everyone for your thoughts - DD managed fine, dog is fine and I have nearly made it home after a long couple of days' work.

Leap - thank you so much for that info, it's incredibly helpful. If I send reports in with the request for an ECHNA, will these be the reports used? Or will they ask for additional reports? (e.g. from the GP, CAMHS, psych etc)

Zoo - I wish I had a nice clean snuffly bed waiting! It sounds amazing. I'm sure Lilzoo appreciated it.

StarryNight04 · 01/11/2021 22:15

Glad all went well bubbles and yes zoo that bed sounds amazing! Small victories can mean everything Thanks

AnneOfAvonlea · 02/11/2021 08:29

Glad it went well for bubbles dd. Some great advice from leap there about the ehcp.

My dd went in for the 1st time ever after a half term on time yesterday, looking forward to seeing her friends. She did a full day. CMe home happy. Today she is so exhausted I can't get her out of bed. Her new ta isn't reminding her to eat or drink and is pushing her to catch up on work in her free periods where she should be regulating. Sigh.
So I want to try and get her in for break. So disruptive for my work.

Fferny1 · 02/11/2021 09:34

@Anne I hope you get your DD into school quickly this morning. @Bubbles I'm glad everything went swimmingly yesterday.
@Zoo you are such a fantastic, kind, thoughtful Mum.
@leap I'm fascinated by your descriptions of the differing care plans involving such a broad spectrum of activities.

DS has gone into school for the first time since summer, after not managing it yesterday. There was a dodgy moment when I thought he wasn't going to get out of the car & his music changed from a cheerful song to one of those Nihilistic end of the world drones. He's told me not to be surprised if he phones for an early pick up.

1leapforward2back · 02/11/2021 21:21

Starry your post is good to hear.

Zoo a comfy bed sounds very appealing.

Anne I hope the 1:1 changing and lack of support hasn't set DD back too much.

Fferny how did DS get on? A good EHCP makes life much easier. EOTAS varies so much because DC with them generally have complex needs that need to be met. It should give DC 'a broad and balanced' curriculum just like they would receive if they attended school, and cover any SEN provision required.

Excellent news Bubbles. The LA must seek advice from those quoted above, but they won't routinely seek other advice. If the LA agree to assess you need to specifically ask, in writing, for anyone you want approached under H e.g. CAMHS (although I suggest you ask for a psychiatrist or CP specifically otherwise it can be anyone from CAMHS)/psychiatrist/GP. "Not known to the service" is not a lawful response.

Legally any independent reports submitted must be considered. In practice how much attention is paid to them is debatable. The LA will probably get their own less detailed, specific and quantified assessments.

Fferny1 · 02/11/2021 21:40

Really well @Leap.
His friends & teachers were really pleased to see him. He was sitting with his friends when I picked him up this afternoon. They have taken on the Psychiatrists advice for a gentle return. So there's no homework for a couple of weeks. I'm not sure, as he's missed so much of his year whether they will enter him for his Gcse's. But I think the most important thing is that Ds is not skulking in his bedroom by himself any more.