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

Thanks. I'm not counting my chickens. I spoke to her last night about how she feels about returning to school next week. She said that she doesn't feel particularly negative but, when I asked her if she was able to go back into full time she said she would need to do at least a couple of days of 1 or 2 lessons. On Wednesday morning she has a dentist appointment during the first lesson (science). She is refusing to go to the lesson though, even though she would only need to be there for 30 minutes. She's not sure if she'll be back to full time by the end of the week. She'll 'see how it goes'. At the end of last term, our student support contact said that she'll schedule a meeting for next week. I really hope there's something more they can do. She's already missed so much work. She hasn't been to a science or maths lesson for weeks and I doubt she'll go to any next week either. My anxiety is already very high and I feel tearful just thinking about it. I can imagine how bad it will be on Monday.

Anne - good luck for Monday and 1step - I hope Ds copes with the wedding.

Zoo, we have shown DS photographs of the Church and of where the reception is. I have made a timetable of the day and gone through a social story - discussing what will happen, who will be there, where we will sit and food etc. I've packed some obligatory Lego, researched the nearest A&E and places we can stop en route... We will take a packed lunch and dinner in case they are needed. It's a military operation.

DS1 won't be wearing a tie except maybe for photographs. Whilst he has improved a tie is still too big a safety concern, especially as he is going to find the day difficult anyway. Aside from DS1 I am not looking forward to it, but it is a family member so we have to go.

Did you chase the LA about the EHCP? What week are you on?

Katalex, I hope the return to school on Monday goes better than you expect.

one-step I was thinking about echo Friday.whom do I contact to chase it up?
We have a TAF Wednesday,should I mention it then or try tackle it beforehand?(sleep deprived and trouble making decisions)
Dd2 escalating regarding return school.spanish exam Mock Monday first thing not helping.garden pacing in the dark.ate no tea.
I'm just starting to get hang of planning for potential issues.OT moans at me for limiting experiences based on what he struggles with.i need stop "protecting" him from things that bother him(for example avoiding super busy places at busiest times)easier said than done when I'm trailing 3dc on foot,he and dd2 feed anxiety from each other and youngest despite be 12 will moan continuosly if bored/complain about them needing suck it upshut up.she has very very little empathy and as subtle as a sledgehammer.i seriously suspect they all on spectrum.....

Asked D's to do heggarty maths school gave set up for him.he has advised it every excuse possible and I somehow messed up password...
So I let him do it yesterday when we finally got round to using it since school reset it
He grumbled and got angry/not wanted donut.did one bit then put away
Today he argued didn't want to them couldn't get back into account.i got cross as if he doesn't want do something he really won't do it no matter what I say it do.i said no phone or PS3 if you don't do it.he claims was accident and can't work out how locked himself out.he then got angry and started tell at me so I said go to your room.i went up 10 mins later and was sat in window back to me watch his beloved birdies
Refuse even acknowledge me so I said clearly you don't want talk and left

I have so much anxiety about tomorrow. It is awful. Dd is very stressed
She is also saying she couldn't possibly change classes (now I have suggested to school) because it would be more stressful than staying with stressful situation.
Basically it is all crap

Anne
Expecting a bumpy start to my day as dd2 has mock Spanish paper first thing....

Took dd in this afternoon for a meeting with hoy. Confirmed they csmt provide an lsa due to funding but they can move her from student support to learning support. Dd is frustrated as that is just a change in venue rather than extra support.
They have confirmed she is on sen register, will set up a meeting with me and senco to discuss ehcp process but prepared me that many get rejected. I said that's fine, let me know process and I will prepare the submission.
They have said we can take one lesson at a time. They will take any guidance we can give eg, staff not to ask her direct questions (as it is too hard for her to process) but her putting hand up is different. She can list a few people to sit with all the time, make sure she leaves lessons last, etc. It was quite positive.
But...dd only saw the negatives. She thinks everyone is out to get her. I am very worried about her.

Anne D's cannot see positives in ANY situation..we plug away at it

I heard today D's has been granted echp on ESMH priority as he hasn't completed ASD assessment yet

I feel like an unprepared rabbit in headlights....

Weekend wasn't easy, but we survived.

Anne, it is good the school are willing to work with you. 1:1 in class support in secondary without either an EHCP or high needs funding is rare. Hopefully class teachers will adhere to the reasonable adjustments you have suggested. DS1 focuses on the negatives too. It's draining. Make sure you follow up meetings and phone conversations with emails so as to create a paper trail for evidence.

I would press on and get the EHCNA request in ASAP because it takes 20 weeks - and that's without needing to appeal. IPSEA have a model letter. The LA may reject a request for an assessment, many do in the hope you won't take it further, but DD meets the legal threshold, so you would stand a good chance at tribunal or the LA would concede before the hearing. The legal threshold is whether DC has or may have SEN, and whether they may need SEN provision via an EHCP.

In the meantime if DD can not cope with school getting her signed off sick means the LA have a statutory duty to provide education.

Zoo, I hope today was a better day for DS, and DD2's mock wasn't too stressful. So pleased DS will get an EHCP. When you get the draft sure it is specific and quantified otherwise it isn't worth the paper it is written on. SOSSEN check drafts. What week are you at?

We try not to go to places when they will be too busy for DS1 or DS3. It's a matter of weighing up how much challenge is OK and what is too much.

Katalex and Anne, in DD1s first term at secondary school (she’s in year 8 now) we had the worst time getting her to school. Hours of screaming and crying, sitting in the car outside school, threats and cajoling and tears all round. I used to dread it all the time. I still feel traumatised now. Somehow we managed to keep her in school because I was terrified that once she missed one day she would never go back. Leaving a distraught child at school is devastating and I would be on pieces by the time I got to work. It’s ‘better’ now because she doesn’t eat for 4 hrs before she leaves the house and she doesn’t eat or drink at school at all. Not an ideal solution! Honestly though I’m so grateful for this thread and Zoo who encouraged me to keep her in school when I was completely ready to quit. I know it’s not the right answer for everyone or even possible for everyone but for us it was the right thing.

We’ve had a bit of a tough couple of days. 4 hour meltdown yesterday about how fat and tall she is (actually she is a completely normal height and healthy BMI unlike me - I am a bit of a fatty). 3 hour meltdown tonight about nothing really but despite repeated gentle suggestions that she should go to bed/have some time out it went on and on until I ended up in tears - only briefly but honestly sometimes I feel like I just need to get out, like I can’t do this anymore.

The good news is I finally spoke on the phone to someone from CAMHS and poured out the whole story, expecting them to tell me it’s not enough to warrant their help, but the woman was so kind, she told me it sounds like I’ve been dealing with an awful lot for a long time and asked me how I was coping! They’ve put us into a slot that someone else cancelled and we are being seen tomorrow. So far DD1 is agreeing to go but says if the person is smaller than her she won’t speak to them. I hope I can get across to them everything that’s going on. We can tend to present our best selves in these circumstances but that doesn’t help anyone.

bigbus good luck at CAMHS

Good luck at camhs bigbus

Have heard from school and they have sent me all of dds topics for the term, given me the name of the senco and confirmed an appt will be set up, and have agreed I can take dd into learning support itself this morning if needed. Hopefully I can just drop her off. They are working with me which is good.
Next step is for DH and I to call the ipsea helpline to get our stuff in order. And when I speak with senco I will know what what.
I did draft the DLA form the other day. I just need to get the documentation together now.

All sounds positive Anne
Dd2 didn't go school today.was a uni trip an hour away by coach and she is struggling so much with day to day stuff,often minute by minute something that 2years away isn't high enough priority when it means shes so stressed she cannot/eat/sleep/function.shes still a nervous wreck.ive put on new glitter light and soothing music and she's watching dancing patterns in darkened room try breathe deeply

Dd didn't go to school yesterday. She was supposed to go in for the last lesson but I couldn't wake her up. She told me that she didn't get to sleep until about 5am Sunday night, presumably she was very anxious about going back. Today she went in for the first lesson. I was worried that I wouldn't be able to wake her up this morning as I know she was still awake at 2am. I guess she knew she would be able to cope with being a bit tired because she was coming home at 10am. She told me last night that she just needs to go at her own pace so she is not overwhelmed by doing too much, too soon. She really wants to get back into school. I found a document yesterday about anxiety and school. It advises against forcing them to go and recommends desentitising them by gradually exposing them to school and to let them be in control. Lack of control is one of DD's issues so I really think this is the way to go with her. I know some children will be fine if pushed (my DS is one of them) but definitely not DD. We should be meeting with student suppport some time this week so I'll need to find out how DD can catch up with the work that she's missed and keep up while she's still on a reduced timetable.

How did the Spanish exam go yesterday stillliving?

Anne - I'm really glad to hear that the school is being so supportive.

Bigbus - good luck with CAMHS. I'm expecting them to tell me my dd is not bad enough for their support, if I can even get a referral from the GP on Thursday.

I forgot to mention that DH is picking up our cat from the shelter at lunchtime. His name is Gary but the volunteer who's been looking after him has been calling him Dave so he probably has no idea what his name is

katalex when we got boy rescue cats they were scooby and princess,cept princess was actually a prince!!i renamed then scout and Atticus and when called by these for food/treats they grasp very quickly

Oh,and dd2 found exam v hard.esp as listening they were told had sit still til all that was done then if needed loo etc urgently could go during writing part.she found be "trapped" there v stressful

Big good luck today. I hope whoever you see listens as well as the person you spoke to on the phone.

Anne it is so much easier when people work with you isn't it? I hope you managed to get DD into school this morning. Do keep trying if you can't get an IPSEA phone appointment straight away. Well done on the DLA form. I don't know whether you already have, but if you ring DWP they will send you a dated form, the claim will then be backdated to the date you phoned rather than the date they receive your form if you download it.

Katalex Building back up to a full time timetable is OK short term for those for whom it will work. But a child with severe anxiety &/or other MH problems isn't likely to be able to reintegrate because once they have stopped something their anxiety/MH problems build school into an even bigger hurdle. They become anxious not only about the original issues but also of missing work, friends moving on etc. This is DS' psychiatrists view, and I believe current research supports that. When DS attended the CAMHS day unit education was an important part of the day. Giving DC control isn't always good either, because for those with serious MH problems you aren't giving DC control but giving the MH problem control. Have you looked at PDA techniques?

You also need to be aware long term part time timetables are illegal, whether or not you agree to it. If DD can not manage full time education you should apply for an EHCP, and pushing school to provide more support.

Psychiatrists would suggest DD gets up at the same time each morning even if she hasn't slept well, because otherwise you get into a viscous circle.

CAMHS appointment this morning was, quite frankly, shit. DS1 worked himself up so much he vomited and wore himself out. I'm waiting for a reply from LA as I'm determined to get DS1 a placement.

Sorry your appointment was bad 1step. A new cat sounds exciting katalex. I agree with 1step to be careful about giving dd too much control although I understand how she feels noone is hearing her and not in charge of her own fate.
I just got back from doctor. She has put me on sertraline which is funny as it's the same as dd. Also referred me to pain clinic.

Well done to ds zoo but sorry dd found it hard. Gosh ,its hard this parenting isnt it. .

one-step sorry camhs was so disappointing today.hope D's is ok

Hello all
Today (yesterday now!) sounds like a mixed bag all round!
CAMHS went well - DD1 was very distressed on the way because of the way one of the office ladies spoke to her when I picked her up so started the assessment upset but did manage to talk a bit. It went on for nearly 2hrs but then I had to end it because I would have been late to pick up DS. It’s a shame, I didn’t realise it was so long or I would have made arrangements. I think they are leaning towards ASD which has long been my suspicion although quite an atypical presentation in some ways. She may need some further neurodevelopmental assessments. They seem to be taking it all seriously which is good. When you sit down and say it all out loud it sounds quite serious! We’ve had some epic 3 and 4 hour meltdowns recently but all calm now.

On a lighter note we have two new kittens - Jared and Billy! They are super cute.

The CAMHS appoint sounds positive Bus. ASD often presents differently in high functioning females.

Anne, I hope the ADs help and they don't make you feel too awful to begin with.

I can't sleep.

one-step I fall asleep in seconds,but can't STAY asleep.been awake since 3....

Bigbusgreat news on camhs front and those are just too adorable kitties!!😍😍😍😍