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

runner good luck for friday.hope transition back is smooth
We aren't back til next Monday.I'm hoping they will contact us about DD return to school/if she can restart yr 12
DS home visit there's still no news of a scheduled time to visit(sometimes during week beg 6th sept ahead of first visit into a school in 3years the following week

@Stilllivinginazoo so pleased she did well on the day, that's great. @teelizzy how very sad. So many are struggling at the moment it seems.

Tee such sad news. Lovely, it is only natural for it to stir up feelings and thoughts about DD1. The death of a child brings the most unimaginable pain. DD1 talking to you is a positive sign.

Anne I hope DD continues to put on weight.

Zoo I'm glad everyone coped relatively well with the wedding. DD2 recovering herself to carry on was better than you could have expected. How is it going with DD3?

Runner your holiday sounds a success. To keep momentum would DD be open to bribery? OT should be in the EHCP. I would be complaining and threatening Judicial Review for the breach of timescales.

Always in reality DS is doing more than one thing a day, he's managing many different tasks - washed, dressed, eating, communicating... Spoon theory explains it well. Sensory OT assessments aren't available on the NHS in all areas. Where they are offered some need a referral from CAMHS, community papers or GP, but in some you can self refer. Sensory OT assessment can also be part of EHCNAs.

Good luck everyone for the return to school. DS3's stress is building. Trying on uniform led to a meltdown because his school shoes "don't feel right" and "aren't the right ones". They are the same one he's had for several years just in a bigger size!

leapwhen does he return to school?
Dd3 is proving to be "an experience".she did actually speak yesterday more than yes /no.i got 2whole sentences,and she ask play chess today and trounced me!
We went very long walk and lots complaining was tired(out of practise) but I had promised dd2 the walk to a forest as was part her summer bucket list.weve done it before, number of times,and did take snacks/drinks(around 7-8 miles round trip)
She's had lunch and now retreated upstairs

That's an impressively long walk zoo! I think everyone is entitled to feel tired after that!
Leap, unfortunately DD is not open to bribery, her mood seems a bit better today and she has spoken to a friend via zoom and has been texting so that's good for her spirits.
Have finally got a response from LA to say they will finalise her plan by Friday . If school say they can't meet need can LA still name them on the plan??
She now has a new senco who I spoke to today and isn't up to speed ,there's been no handover and she wasn't aware previous senco had replied to draft consultation to say they they couldn't meet need,so really hope change of staff doesn't throw a spanner in the works.

Runner even if DD isn't leaving the house often social contact is an improvement on the past.

As the school isn't wholly independent the LA can still name the school despite their objection. Once named the school must admit, if they refuse, depending on whether the school is maintained or an academy, the LA or Secretary of State respectively can direct them to admit.

The same applies to your preference. Unless wholly independent the LA can, and must, name your preference even if the school objects unless the LA can prove one of the following:

• The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
• The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
• The attendance of the child or young person would be incompatible with the efficient use of resources.

Zoo asking to play chess and actively engaging with you is a step forward.

DS3 starts properly next week. I think it is more how his general school anxiety is manifesting itself rather than all being about the shoes per se, but we are going to try to get him to wear them a bit each day.

Can I join please. Dd has emetophobia and some anxiety about school thrown in

Hoping this year will go better as she has a more solid and kinder friendship group and it's gcse year too

Found her A lovely young maths tutor too to bolster her confidence

She starts cbt therapy for the phobia very soon too.

whenwillthemadnessend welcome

LA reassessed the ehcp cased based on arfid diagnosis. They have not agreed but haven't said no either. They are insisting on LA OT assessment. I waited in all day last week for them to come and do that and noone turned up. More delays.
They OT is now coming tomorrow as I refused to take dd out of school her first week back.

Appeal date is set for January. A full year since initial request went in...

Welcome@whenwillthemadnessend.
Our DDs are the same age, I hope cbt goes well, it's really great she has a strong friendship group.
@anneofavonlea good luck with OT and EHCP, it's depressing it takes so long to get to appeal.
DD managed her first day back at school really well.
Fingers crossed for next week, senco has suggested she goes in 10-2.30, she can't manage full days but the stress of juggling work and trying to get her into school is beyond exhausting .
We got her Finalised EHCP today, LA have ignored all our suggested ammendments including the ones about correcting her date of birth and that all her outcomes are by end of key stage 3 when shes in key stage 4.
I honestly don't think they read anything that's sent to them. Clearly any comments that Ed Psych made that pointed towards specialist have been excluded. They haven't named a school they have just put mainstream. We will go to tribunal, I knew they would stick mainstream but I am depressed that they ignored all but one of the ammendments we asked for.

Yesterday we had confirmation dd2 can rest year 12.it is so rarein her school no current staff have any experience of this.as such a review for October half term is in place to check she's keeping up and that her MH is too
Lots freak outs,adding to stress is she cannot do exactly same courses due to timetable issues.history and sociology,fine.english Lang won't be possible,so on Monday she will be discussing head of year other options which are Lang and lit combo,film studies,politics and business studies.latter 2 are deffo no no.the combo might be ok if no Shakespeare as she found that very hard going/hard to motivate at GCSE level.
DS has home visit on Monday at 1230.head of hub plus another teacher.hes increasing panic includes return of palpitations..he's started work with CBT at camhs
Family therapist has had to withdraw after conflict of interest.gutted.i liked him and felt we got on ok
Week with lil zoo went bad to worst.yesterday,knowing it's all over tom she was downright horrid.devlared when given options for parks/country parks to visit today before returns to DD1 just wants go home.declared has been drinking cow's milk at dd1 and then drank11/2 pints D's full fat milk leaving him without despite having soy milk he won't drink in fridgeshe may well have grown out of it,but had terrific got pain last night and was even more vile...

Thank you all

Sounds like you all have your hands full but great that you are all so supportive of your kids. That's a great comfy to them

Dd had first day back yesterday. Went ok o think. Hope it continues. Today is first proper cbt appt. assessment was a few weeks ago. I'm hoping it doesn't freak her out as she won't get over emetophobia without help

Zoo, sorry yesterday was so difficult , really good news that DD can resit year 12 , hope the new option works out, and sounds like new school for DS are trying to help transition. Good luck with cbt, gutting about family therapy it's not always easy to find something that clicks.
Hope everyone's transition back to school goes as smoothly as possible,
Madness_pleased first day back went smoothly madness, fingers crossed cbt will help with phobia

Welcome madness, I hope the CBT went well.

Anne I hope the OT went well, don't be surprised if the report undermines your independent report, that's why the LA want their own. It will be less detailed, specific and quantified.

Zoo I'm glad DD2 can resist Y12. Sorry to hear DD3 has been challenging and family therapy has been delayed.

Runner DD did really well. Don't bother with mediation, just get the certificate and appeal. LAs use it as a delaying tactic and if they are going to concede they will regardless of whether you actively partake in mediation or just get the certificate.

Only naming a type of placement suggests the LA are struggling to find a school that even they think can meet needs. You stand a good chance at appeal. While there's no legal obligation to name a school as long as the type is stated case law suggests where MS is stated a school should normally be named. (MH v Hounslow [2004] EWCA 770 [2004] ELR 424). A parent on the SN boards was in a similar situation last year. DC's MS placement broke down, LA didn't have a MS to name, poster wanted indie SS, tribunal adjourned to give LA time to find a school, poster won appeal.

If no school is named what is the LA's plan for providing an education and delivering provision in section F?

Haven't posted for a few weeks but check the thread fairly regularly.

Hello to Madness - sorry things are difficult for your DD.

Zoo - pleased that DD1's wedding went well and that DD2, Lil Zoo and DS coped so well. Great news also that DD2 can retake Y12as you both hoped. Sorry you have to change family therapist when you liked the one you'd got.

Tee - sorry to hear the tragic news about your DD's friend - hope she's doing ok

Runner - your DD did really well on holiday and I empathise with you wanting to continue the momentum once home. I find it so difficult to devote enough time to trying to help DD2 out of her comfort zone but so many different demands on time in the day (queue guilt). Sorry you are going to have to go to appeal.

Leap - hope DS3 school anxiety possibly manifesting in shoe has lessened.

I had a phone call from the LA on Friday to say that they have reviewed the additional evidence we submitted for EHCNA appeal and now agree to assess DD2.

As we suspected from the SAR evidence we received from the LA, they didn't receive any evidence from school. I don't know how this happened - school provided us with copies and believe they submitted it.

Have been looking at IPSEA to work out what happens during needs assessment as I want to know what to expect and what to look out for (I don't trust anyone else to do the right thing by DD2 as so far she's been failed). I read that we can request professionals we we want the LA to contact and assessments we feel should be carried out during the needs assessment especially if DD2 is already on a waiting list for the particular service or an assessment has been recommended. DD2 has been referred for ASC assessment - can I ask that the LA gets this assessment done as part of the EHCNA or is that a step too far?! Private EP report done a month ago recommends a Sensory OT assessment so we will ask for this. Is there anything else I should be requesting? Do I have to specify that I want them to seek advise from CAMHS psychiatrist? (I would assume they would but I also don't want to assume!) LA said letters will be sent next week and we will need to reply to ask them to consider any further evidence we have or we can advise we want them to consider the evidence we submitted with the appeal. We don't have any further evidence an honestly think as we submitted appeal 3 weeks ago we're up-to-date as we can be right now.

Obviously delighted with this news especially as appeal wasn't due to be heard until end-December but expect there will be more battles to come as obviously agreement to assess doesn't mean agreement to issue EHCP. LA asked if DD2 is still registered with school and I honestly don't know. Had tentative plan at the end of summer term for her to retake Y11 via EOTAS setting but school have not confirmed as yet so we are in limbo. Suspect LA would like DD2 to be registered with school for financial reasons.

DD2 has changed to Sertraline and will be moving to therapeutic dose in a couple of weeks. She feels it may be helping her anxiety more than Fluoxetine and we have noticed some minor improvements eg motivating herself to get out of bed a bit earlier to go and do something at her desk. She also managed a couple of appointments without so much recovery time afterwards as usual. The last week she seems to have gone backwards and really didn't cope at CAMHS appointment with very limited communication and huge anxiety - appointment ended early as a result. I am failing dismally to get her to leave the house every day and going in the garden as she is supposed to be doing. Still no CAMHS care coordinator or therapy due to long delays unfortunately.

Sorry - that was long!

Muddling Brilliant news. The step backwards may be in response to schools returning.

During a needs assessment the LA must seek the following advice:
"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)

H can include SALT, OT (including sensory OT) and psychiatrist &/or clinical psychologist. All are reasonable for DD, I suggest you ask in writing.

Unfortunately, an ASD assessment to diagnose won't be carried out. But, you can request assessments by the different HCPs who are involved in diagnosing ASD such as SALT, OT, psychiatrist, psychologist. CAMHS won't automatically be asked for advice, you have to request it. Ask specifically for a psychiatrist &/or clinical psychologist otherwise it could be anyone from CAMHS.

The LA would need to know if DD was registered at school because if she is they need to approach the school for advice as part of the EHCNA. If you indicated DD intended to continue at the school post 16 they can not legally have removed DD from the roll. If DD is still on roll don't allow he school to off roll DD and don't deregister, it is easier to get support when on a school's roll.

Don't be surprised if the plan for resitting Y11 with EOTAS doesn't materialise. Without an EHCP the LA don't have a statutory duty to provide education to post 16 pupils unable to attend school due to their health. (Although I believe if there was a test case that would change given the raising of the participation age.)

muddling you aren't failing if she's not doing all her camhs work.ypu are doing your best and she has to work with it too.if not that's not your fault
Not sure how schools evidence got displaced.hope you get that sorted

Good luck to anyone with back to school tom🍀🍀🍀🍀🍀

Hello..... I am new here. My year 11 daughter has anxiety and low mood. She self harms regularly and has stopped seeing friends. She is DREADING school tomorrow. I'm at my whits end really. She is awaiting therapy through CAMHS but the wait is at least another 5 months. So far I have been given very little direction as to what I can do. I'm really interested to see what others here are doing. Any advice would be greatfully recieved. X

Morning and welcomename andgamechange123
Well I can only speak from my experience
Top tip-dont get off the school routine.much harder to re instate it,than plod on struggling in my experience.whag year is she going into?the step up to secondary is a big jump for anxious children
Secondary school tips-
*Break down difficulties and problem solve-anxious and needs loo-a toilet pass?
Scared of being "trapped" in class- speak to tutor/head of year and ask sit near door?
Gets overwhelmed- time out/corridor pass?
*Know who to go to when distressed.all secondary schools have pastoral care/counsellors
*Do keep school in the loop.in my experience they are very happy to try and help but are not so good if you leave things and communication stalls on all sides
What was she like pre covid?this has whack us all of 6,children especially,and lack knowing what's coming seriously messed with anxiety as our need to understand and somewhat control things doesn't like uncertainty
My DC like routine with that,always knowing what's next,no sudden major changes
Was she social before?has she many friends?the keys to good MH are sleep,eating well,exerciseconnection with others,and relaxation/having fun
Breaking that down-
Sleep- bedtimes do matter,off line time does matter.this is not easy and I've not cracked it yet.ds has an Alexa so no blue light for podcasts and white noise.dd2(17) isn't accepting any ideas and suffers terribly because of it
-eating well means different things to different people but regular eating patterns and plenty fluids make quite a difference
-exercise removes excess cortisoland was something camhs were very keen on for dd2.cycling,roller skating,trampolining,swimming etc all count as does exercise on u tube if feeling anti social
Mine hate heart pounding,so we walk.A LOT.we lucky to live within short distance beautiful parks and a nature reserve.we have become very mindful on these looking at changes during the seasons and different birds.dd loves to visit early evening and see wild rabbits and occasional fox or deer💖
-connection.this is very important.simple things like baking together,playing a card/board game,doing a craft together,a walk,hanging out with friends.having a laugh/connecting with others is very important as social isolation messes with anxiety dreadfully

@nameandgamechange123
Welcome. I'm sorry things are so tough right now.
I have no magic wand but lots of sympathy , the anxiety of returning to school is horrendous for any dc with anxiety not to mention their their parents.

If you haven't already I would contact school senco and or pastoral manager and see if some support can be put in place and try and keep everything calm and agree a routine at home.
Re CAMHS , I wish you luck, keep phoning, keep pestering., honestly my dd has barely been offered anything after waiting months and months ( initial referral.was turned down)we were told she was too shut down to.engage with therapy and they couldn't offer anything, after a lot of pushing and asc diagnosis she got 9x1 hour group zoom sessions which hasn't touched the sides.
If you can afford it and I realise it may not be possible I would look at private therapy and possibly a child and adolescent psychiatrist who can prescribe medication if needed( ime GPS can't or won't do this for under 18s) The other thing I think that is worth doing is asking school if they can refer her to the early help service ( not sure if this is nationwide but hopefully it is) or if they can refer her to any service that may be able to help.
I also know a parent who complained about service received from.camhs to her mp, that seemed to help somewhat and her DD was offered more help, maybe I should do that too!
Muddling that's really good LA have agreed to assess, leaps advice is good, please don't assume they will consult camhs or anyone else they won't. I made that mistake, I had to push and even with response from cahms, early help, private psychiatrist, they still didnt include any health needs on her plan.
Good luck today everyone!
Good luck to everyone tomorrow.

I hope DC managed to go to school today and that their days go as well as they can. Good luck to those returning tomorrow.

@Stilllivinginazoo - I know you are right really. Not sure DD2 does want to engage that much - she doesn't like to think about the future and would probably stay in her room/the house with no pushing. I did persuade her to go in the garden yesterday in the end - sometimes need to use firm "we are doing it" approach with her I find but still too 3 attempts. Once out there she was quite chatty and seemed to quite enjoy herself.

@Runnerduck34 - I will take your advice and try not to assume the LA will contact anyone unless I suggest it! Sneaky lot aren't they?

@1leapforward2back - you could be right about backward step being in response to school term starting (even though DD2 hasn't set foot there in nearly a year). Also DD1 leaving for university next week and DD2 loves to spend time with her especially when feeling low - DD1 is really kind and can often lift DD2's spirits when we can't. Medication probably in the mix too.

Will ask for LA to consider all evidence we've already submitted with appeal including recent EP report and the missing school evidence.

I think I should also request (in writing as you suggest) that they contact:-

School SENDCo
EOTAS SENDCo
CAMHS consultant DD2 sees (works within psychiatric team and can prescribe but doesn't have psychiatrist as job title)

Psychiatrist
Clinical Psychologist (should I specify CAMHS personnel for these two or that they are child/adolescent psychiatrist/psychologist?)

OT assessment including sensory OT assessment - EP report suggested OT assessment to explore sensory profile in more depth.

SALT - private therapist report from a year ago suggested this referral might be helpful (I didn't follow up as thought this might come from CAMHS).

Hopefully that covers everything?

Still waiting to hear from school (have chased). Definitely haven't deregistered and meeting at school at end of summer to discuss future concluded by all parties that DD would stay/repeat via EOTAS. School and EOTAS setting both agreed it could happen in principle but school needed to gain final approval internally. I understand there would be a cost to school at this point. I assumed that school could remove DD2 from the roll if they want to as she doesn't have the qualifications to move to 6th form but has technically completed her GCSE year. I hoped it would at least be an interim provision while going through the EHCNA process but I am prepared for my hopes to be dashed - I'm panicking about everything internally as I just don't know what we will do if none of this works out.

Hello @Nameandgamechange123 sorry you and your DD are having a tough time and I hope you get a CAMHS appointment soon. Is the 5 month wait for initial appointment or for actual treatment? I believe some CAMHS don't allow you to combine private treatment and CAMHS treatment just so you are aware - probably differs around the country but seems to be the case in our area.

Welcome gamecharger. You have received some excellent advice already.

Muddling you don't need to request the LA approach the SENCOs, they have to be. Don't specify the psychiatrist and clinical psychologist are from CAMHS, because if the NHS can't or won't assess within the statutory timescales the LA must commission independent assessments.

It will be the LA who decide on the EOTAS, as it is them who have the statutory duty. Although, in theory, the school could purchase alternative provision, but as to whether it would be with the same provider the LA uses depends on how things are organised locally. I say in theory because it is unusual for schools to purchase alternative provision for post 16 pupils. Pupil Registration Regulations 2006 8(1)(k) is the relevant point about not being able to deregister if there was intent to return post 16.

@1leapforward2back you are extremely knowledgeable and once again I am grateful for your time and advice

Firstly- got DD into school,on-time!she may have snap and snarled at my reminders that "were to focussed on positivity I'm allowed to feel like s*"
She message me few times as only had lessons period 3-4.found people she knew from last year who moved into year 13 to sit with for a bit and chat,and sat some other year 12s too as part of a group!
Tutor was English teacher last year.hes a DARLING.and had sociology with last year's head of year
I'm so excited for him!
They're talking about transition for him of visit next week then start visiting with me and dad for short periods,dad and I venturing other rooms over time,then off-site an hour or so til he's comfortable with independent being there.its the softly softly approach I wanted and they're really keen for it to be a positive learning experience for him💖💖💖💖